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    #91
    Ann, it just breaks my heart that Peter's Mom of 96 is having to go through this. I am so thankful that she has you and Peter to keep a close eye on her and I know that you will. I do hope that she is able to make a comeback and go back home. I know that is where she wants to be. She has been so strong that she just might do that. I am surprised that she was not wearing an alert button around her neck. I know your Mom has one.

    I am glad your Mom is still doing as well as she is. It is amazing. I bet she is looking forward to seeing your brother and his wife next month. I just hope she can keep going a few more years. So glad your Mom's cleaning lady knows that nurse. She has been a blessing.


    Rose, we don't know that they will stop our injectables, I guess it could happen. However, since mine cost about $7.600 every 28 days it is not likely that the drug company would not fight to keep this drug on the market. I am concerned (again) about getting help to cover my copay, but it seems that I go through this every year about this time. I always seem to get upset and a little depressed about this time.

    There is another concern for me. My drug has to be kept refrigerated. It was being made in Italy and for a number of months now it is coming from Switzerland. My concern is how are they getting it off the ships, since they don't know which ship it is on or what barges it is on. That means, in my thinking, that it could be sitting somewhere long past the time when it would become unstable. I've had this on my mind now for the past couple of weeks.

    I am glad they were able to keep the home care for seniors in the new bill. I think this is something that has been needed in this country for a long time. I guess only time will tell how much care and how often seniors will be able to get this care. Also, it may depend on a certain income level. We just don't yet know what is in this bill, assuming it does finally get passed.
    Virginia

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      #92
      I broke down and got an Amazon Fire Tablet this evening. I bought it on QVC because they are having a sale on them. I had kind of wanted a new Kindle and this will, I hope, replace that desire to have a new one. Now, the only thing left is that I don't know how to use it, so I will not switch anything over yet. I have never put my e-mail on my iPhone but if I can figure it out I will put it on this tablet so I can sit in my living room and delete all the unwanted e-mails that I get each day rather than coming back to my computer to do it. This tablet works on wifi, which is what my kindle works on, so I already have that.

      I will keep everyone posted as to my progress on it when I get it. Oh, I read and no sim cards. My hands would not deal with anything like that, so I read enough to know that it works on wyfi.
      Virginia

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        #93
        ANN, Peter's mother's fall must have been alarming for all concerned. I can't begin to count the number of incidents like that that have happened in this building too. As we get older, we just have to realize that our pins aren't as stable as they were, but it's almost impossible to keep that in mind when you might have had many decades of counting on your legs and your sense of balance to be there for you.

        In a way people with MS are often luckier as we age because we may have learned that aging lesson when we were much younger. Peter's mother might have been finding that it comes as a nasty surprise later in life. I'm glad she wasn't badly hurt but even a UTI is no easy thing.

        Virginia, you mentioned concern about whether the Rebif was being stored improperly. I had that concern about the (generic) Copaxone too and was surprised to find that it can be OK for 30 days at room temperature. I looked on the Rebif Website, and it states that it will be OK for 30 days between 37'F. and 77'F. if kept out of heat and light. Doesn't it arrive in special packaging meant to keep it cool? Do you have reason to think it might be floating around in transit for too long?

        Does it show some signs of deterioration that you can detect if it has been improperly stored? You could ask the Rebif people (EMD Serone?) about this concern and find out how you would know whether the Rebif you're getting is still going to be effective.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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          #94
          Agate, my concern about the Rebif is exactly what you said - that it is floating around in the Atlantic Ocean for too long and possibly getting over 77 degrees. This is highly possible since the docks are backed up for lord only knows how long. This has been going on for a very long time. It was on the news recently that chemo drugs and heart medications and all kinds of medications are on some of these ships. Obviously, I can't do a thing about it, so I will try to stop worrying about it. It is out of my control.


          When I get my new tablet I will try to learn to work it enough to come on here and not have to come back to my computer. I already come on and read from my iPhone and sometimes I type a reply, but for me it is difficult to type on the iPhone.

          My brother told me to learn to use the internet on it, but not to put my banking on it. He said to keep this computer for banking and have the tablet for other things. He also advised me to turn Alexa off. I had already considered doing that.

          I will tell y'all a funny story that happened to me one day this past week. My neighbor got a new iPhone recently and is having a good time asking Seri questions. Also, my brother asked Seri a question when I was in the car with him the last time. Well, a long time ago I told Seri to get lost and hush and things like that. I told her she was getting on my nerves, always asking if she could help me. I doubt that had anything to do with it, but I had not heard from Seri in a very long time, at least months and months. So, I decided to see if she was still on my phone. I picked it up and said "Seri, are you still there?" She said "I am still here, how can I help you?" I responded by saying "I really don't need anything right now". She said "If you need anything just let me know. I will be here".

          Anyone would have thought I was carrying on a live conversation with a real person. Someone please tell me how that is done if anyone knows.!!!!!!
          Last edited by Virginia; 10-30-2021, 04:55 PM.
          Virginia

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            #95
            Siri seems to be just a more sophisticated version of a Google search. I've been using Google search for quite a while in the same way as people are using Siri. I enter the name of a song I want to hear, and Google finds it, usually in several versions. I ask Google search a dopey question and always get some kind of answer, always in the form of links to click on. It won't give me a "personalized" answer the way Siri does but they've tricked Siri out with a voice and the ability to "converse."

            I wouldn't use my smartphone or my iPad for any financial transactions or bank account. Those are strictly kept on the desktop.

            I have trouble trusting mobile devices. They're too--well, mobile. They're all over the place. They're meant to be highly portable. OK, fine, but I don't want them carrying my financial information around. I don't need to have that with me every minute.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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