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Sunshine 2's Keep On Moving thread - June

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    Sunshine 2's Keep On Moving thread - June

    In case Sunshine 2 isn't up to posting this, here is her Keep On Moving thread for June:

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps you did housework? Or exercised in a pool? Tracked your count of steps? Chased your cat around the home? Pushed the wheelchair wheels with your arms at the store? Post them here and we can support and egg each other on.

    REMEMBER: this is a keep on moving thread, not keep on exercising! Any moving is important it doesn't have to be exercise! Even Science proves that.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    #2
    My average step count for May, based on 21 days: 1675 steps

    Sunshine, next month if you'd like to resume starting this thread, please feel free to do that. I've said before that there's sometimes way too much of agate on this board.

    Naming the Chitchat thread in memory of Peg seems like an excellent idea to me, and it's nice to see others stepping up to the plate to start that thread.
    Last edited by agate; 06-05-2022, 05:50 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    Comment


      #3
      Agate, I miss your smiling face, but the bouquet is pretty. There is not enough of Agate on this board and I think others would agree with that. Please don't slow down on your posting. This board needs more people like you, not less.

      Your May step count is really great. You are doing a lot.
      Virginia

      Comment


        #4
        Virginia, thank you for the kind words. It's not that I think I'm objectionable. It's that if any one person seems to dominate a board, it starts looking as if only that one person is there, posting away--and newcomers (or returning oldtimers checking in) are apt to conclude that the place isn't very active.

        Of course those newcomers or returning oldtimers could conclude that they could be very helpful by chiming in with a post or two and pepping up the place but I've noticed that more often than not, they just decide there's "nobody home" and move on to some livelier place.

        So it's nice if other people are starting threads.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

        Comment


          #5
          Agate, I know it is your decision to make, but I have to disagree with why you say you are making it. I think old timers enjoy seeing a name they recognize when they happen to drop in. You are the one they know and respect most because you have been faithful to this forum for a long time. The rest of us have kind of come and gone and while I think I have been pretty active the past several years, I do not have the ability to post things that draw people like you do. Any newcomers wouldn't know the difference and as I said old timers enjoy seeing a name they respect and recognize.

          Besides all of the above, we need members to be active as possible right now.
          Virginia

          Comment


            #6
            Actually I didn't make any decision. I hadn't yet posted a Chitchat thread, and another person took the initiative and started one. I'm glad that people feel free to initiate threads and introduce changes, like naming it in memory of Peg.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

            Comment


              #7
              I think that was kind of settled a long time ago about naming it in memory of Peg. We decided not to do it. I was happy to have a once in awhile thread in Peg's memory, but not on an ongoing basis. Any newcomers would not recognize why it was being called that and this is only my opinion, but I feel if it was done every month it would kind of lose it's meaning. This is just my opinion. Anyway, I think you sometime mentioned Peg at the opening of the thread with a reference to the "tar paper shack", and the corn and the good food that we associate with Peg was brought up from time to time, I think especially on Holidays.

              I am only one person on this forum, but the above was my remembrance of what we discussed when Peg passed away.
              Last edited by Virginia; 06-06-2022, 05:12 PM.
              Virginia

              Comment


                #8
                I'd forgotten that, and that's a really good point. There are at least 4 BT forums that are now named in memory of people, but, like you, I'm not sure that's such a good idea because newcomers immediately wonder who these people are or were and might feel as if this is an in-group that they don't feel welcome in--the group of people who remember Grassman or JanDel or anyone else who is being memorialized. It's a nice tribute but there are problems with it. Also, not everyone who dies can be memorialized in this way, and where does that leave people who probably deserve to be memorialized but aren't?

                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                Comment


                  #9
                  We have lost so many on this forum that it would really get cumbersome to try and name a thread after all of them. I tend to cling to the ones that are left because I don't want to lose anymore. Cat's cooking thread is there, but it is only there because she started it and named the thread. When Grassman passed away some people wanted to put a special sticky or something in memory of him. I can't remember exactly what it was that was proposed. It was discussed and the powers that be back then came on and said that he would be remembered on one of the lesser forums. There was an awful lot of discussion about it back then. Agate, you probably remember all this. Do you remember how long the thread got that was in memory of him? We had so many people and I think people from other boards came on here to pay tribute. I agree that it was right to do what was done, in view of all the others we have lost since then. A lot of people did not agree with this.
                  Virginia

                  Comment


                    #10
                    I do recall a sticky thread in Grassman's memory--I think it still can be seen in the Archives. They aren't available any more but I understand that eventually they will be restored. I don't recall a discussion about it but I'm sure there would have been one, and he is still memorialized here with the Medicinal Cannabis forum in his name. There was a recent post there (5/24/22) BTW.

                    I agree that we can't go in for memorializing people here, at least not any more. Message boards aren't so trendy any more, and people seem to prefer social media sites like Twitter and Facebook. They may turn into a passing fad but so far they aren't going away. If we look as if we're mainly just looking backward to our past glory, we start looking as if we're ready for a museum.

                    We all were fond of Peg, I'm sure, and would like to do something in her memory, but maybe just remembering her from time to time in our posts would be a way of accomplishing that.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment


                      #11
                      Agate, that's right the Medicinal Cannabis forum was the one that whoever was in charge back then decided should honor Grassman. The thread I was talking about was kept at the top of the page and got very long when he passed away. The people from Canada came on to post on it. He had a lot of friends and never even realized it.
                      Virginia

                      Comment


                        #12
                        That thread at the top of the page was a sticky thread that you could see again in the Archives if/when we get them back.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment


                          #13
                          In the past we've discussed the pros and cons of pedometers, and I'm still interested in finding an accurate one. The two I'm currently using aren't especially reliable, and I'm thinking of trying one of the types recommended in this article from Medical News Today (January 2022):

                          Only registered and activated users can see links., Click Here To Register...
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                          Comment


                            #14
                            ((((((Hugs to All)))))) ~

                            Agate and Virginia ~

                            While I understand your concern about memorializing members in posts or threads, I have faced the reality that new members are often scammers, and most new members do not return to respond to the replies in their posts. One timers, I call them. Twitter and Facebook and other social media are not going to fade. BT is old school. We aren't going to attract hoards of people to join our very small group of regular posters.

                            I requested the memorializing of Bobby and Matthew for the Norrie Disease forum. Mama Sue convinced me to join BT on the Child Neurology forum. We bonded, as we both had two sons with a rare neurological disease, although my sons were undiagnosed. She lost both of her boys and had a very tragic situation following their passing. On Child Neuro, Mama Sue and her boys were adored. It seemed fitting to me that her boys were remembered on the Norrie Disease forum.

                            As I often visited many forums, I visited the PSP forum, so I know who JanDel is. PSP is also an extremely rare disease, and I think that forum's members wanted to acknowledge JanDel's courage. Grassman was loved across BT. He was a pioneer in MMJ as an alternative treatment, at a time, when I don't believe it was legal in the U.S. Correct me, if I am wrong.

                            BT does have a forum for remembering our members, who have passed. Forget Me Not Garden of Memories. Unfortunately, that forum just sits there with no posts.

                            Love & Light,

                            ❤️❤️❤️❤️

                            Rose

                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              #15
                              Rose I have no concern about remembering them in a post or thread, I do have a concern when it comes to naming a thread after someone, when it was already discussed at length and had been decided against. I realize most of those people do not come on anymore, but I still feel it should be left alone. I don't think Suze-Q meant to change it for good. I think she just wanted to honor her that one time. We often mention Peg and other decreased members in different threads and post.
                              Virginia

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