Viewing 23 reply threads
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    • #13312
      Ally
      Keymaster

      As the year winds down, it’s a good time to reflect on the ways we can better use these forums to serve people with Parkinson’s. Do you have any questions or suggestions for Jean, me and our team to help us improve your experience with these forums?

    • #13891
      Lou Hevly
      Participant

      Upon logging in, where do I go to find out if anyone has posted further comments to a forum I’ve posted to?

    • #13895
      Jean Mellano
      Participant

      Lou, your best bet is to clik the box (after you respond) next to : “Notify me of follow-up replies via email”.

      Or, you can:

      1. clik on your Profile on the right side

      2.  Then clik on NOTIFICATIONS

      Or, you can:

      1. clik on your Profile on the right side

      2. Make sure on next screen that SHOW pull down box has EVERYTHING

      3. clik on ACTIVITY and you will see posts

      4.  then you can clik on the topic.

      LMK if this helps

    • #13898
      Lou Hevly
      Participant

      «1. clik on your Profile on the right side

      2. Then clik on NOTIFICATIONS»

      Doing this I get the “mindfulness” posting reference, but not this one (questions about forums) nor any of the others. Clicking the Activity button does work!

      Thanks!

       

       

       

      • #13899
        Jean Mellano
        Participant

        thanks for the feedback Lou, WordPress can be quirky and it is not always intuitive.  sometimes i wonder if it is WordPress or am i starting to lose my cognitive abilities LOL

         

        i think it is also important to clik the “Notify me of follow-up replies via email” box.

    • #13902
      Lou Hevly
      Participant

      @Jean: “i think it is also important to clik the “Notify me of follow-up replies via email” box.”

      Good idea!

    • #14808
      John McInerney
      Participant

      I have tried to post a comment on the drug I am taking but it keeps implying that ‘Madopar’ is an inappropriate word and won’t accept my post!!

      • #14809
        Jean Mellano
        Participant

        hi john, what post were u trying to respond with Madopar in the text?  could you try it again and use single quotes around ‘Madopar’?   do

        you know how to do a screenshot?

    • #17361
      Toni Shapiro
      Participant

      <p style=”text-align: center;”> Hi Ally, Yes, I have had 3 of my posts held up for moderation.  I don’t understand and I have no idea why this happens.  It’s very frustrating.</p>

    • #17787
      Toni Shapiro
      Participant

      Hello,

      I was under the impression that our posts were private in the sense that it was open only to log in members.  I just googled “mini exercise bikes and PD” as suggested in the forum in response to my post asking if anyone had experience with a mini exercise bike and to my shock my exact post was on the google page with ads for mini bikes for anyone to see.  My full name was included.  Is this normal practice? Do our actual posts come up on google under the Parkinsons Today News Forum? Is the Forum aware of this?

      Thank you

    • #18919
      fakhiuddin ahmed
      Participant

      Please encourage folks to send follow up research projects they have come across. Curing PD in mouse models is exciting but any follow up data on how long did the response lasted, did any morph into neoplastic lesions?

    • #19031
      Ally
      Keymaster

      Hi Toni, Google is probably showing you your comments in the PD forums because it’s conditioned to show you the most relevant (to you) content first. Since Google knows you access this forum, it will show you results from this forum first. Any thing you communicate in private messages is private though. If you’re concerned about your identity/personal information being too publicly visible, you can use a pseudonym – I know a number of people in this community and other forums do that. 🙂

    • #19037
      Toni Shapiro
      Participant

      Hi Ally, Thanks…I am really fine with it. I was just surprised when I saw it. 😲 Thank you for checking for me.Hope you have a nice evening.

    • #20226
      Caroline Harris
      Participant

      how do I rejoin using a different email address.  I don’t seem to be able to change my profile with my current address 

    • #20422
      Diana
      Participant

      Thank you for excepting me into the forum. I just started my first conversation which was asking for help regarding personality changes from Parkinson’s as it relates to the spouse which is what I am. A few seconds after submitting it, it said it was marked as spam. This is really disappointing as it was something that was very important to me and I have no idea why it would be considered spam. Thank you.

    • #20720
      Phil Gattis
      Participant

      I can’t see how to start a new forum.  I think this potential breakthrough deserves one, although there doesn’t seem to be enough information to research it further.

      https://www.sciencefocus.com/news/scientists-identify-gut-bacteria-linked-to-neurodegenerative-conditions/

    • #20722
      Mary Beth Skylis
      Moderator

      Hey Phil,

      Thanks for sharing! So, if you go ahead to one of our forum categories (for example, maybe choose Parkinson’s Research News for that particular topic: https://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-research-news/), then scroll all the way to the bottom. There, you should find a window that allows you to create a new topic.

    • #20727
      Louis Skip Sander
      Participant

      My posts are being rejected. What’s up???

    • #20728
      Louis Skip Sander
      Participant

      The preceding one was NOT rejected!

    • #20729
      Louis Skip Sander
      Participant

      How do I get my photo to appear with my posts?

      • #20735
        Ally
        Keymaster

        Hi Louis – hope this helps:

        1. Click “profile” on the left hand side of the page, near where your name appears

        2. On the new page, click the silhouette of a person’s head, also called “profile”

        3. Click “change profile photo”

        From there you should be able to upload a profile pic.

    • #20752
      Louis Skip Sander
      Participant

      Thanks! It was a bit clunky, but it worked!

    • #21211
      Louis Skip Sander
      Participant

      There is a problem with the links you send me on Parkinson’s News Today. Needless to say, there seems to be no way at all to report the problem, which looks easy to fix. How can I report it?

      • #21215
        Kevin Schaefer
        Keymaster

        Hi Louis, are you referring to the links in the email newsletters?

        • #21223
          Louis Skip Sander
          Participant

          I think so. It’s a bit hard to follow what is what. The site and emails are great overall, but a bit confusing.

          I get a list of links in an email. . The top one never works. The second one opens the first link, but maybe on its second line. I just clicked the third one,  and got thrown off AOL.

          This stuff seems to be consistent, at least with regard to the first two links..

    • #21213
      Phil Gattis
      Participant

      unsubscribe

    • #21543
      Toni Shapiro
      Participant

      Hi, Yes please. Today I have written lengthy replies to Gary regarding his Akathisia post. The first one was never posted and the second one I know I clicked reply and submit and actually saw it but it said ERROR (reply to reply or something like that. All I know is that neither have appeared. Can you please check what happened for me? It’s difficult to type and is frustrating to think I may have to start over again. Thank you so much. Toni

    • #21556
      Louis Skip Sander
      Participant

      The links at the top are still messed up, but easily fixed. Nobody knowledgeable to talk to about it. Sad.

    • #21841
      Michel
      Participant

      Hi Ally

      I am part of a small group of PwP who regularly organise for speakers to talk to us about ways to manage our symptoms.  We had for instance Jimmy Choi talking to us and next week we have the CEO of Vielight talking to us about the photobiomodulation.
      is it okay to share the details of those events on the forum?   There is just zero commercial angle here, just a desire to share knowledge with a bigger group of people who may benefit from it.
      Thank you very much

      Michel

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