Page 4 of 19 FirstFirst 12345678914 ... LastLast
Results 31 to 40 of 187

Thread: OT August Chit Chat

  1. #31
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    7,899
    Blog Entries
    12

    Default

    Quote Originally Posted by Catdancer View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Another fun word game I've seen on another board: someone posts a word. It could be anything. Like "cat". The next person to post has to post a word that relates: here it could go in a lot of directions -- types of cats, wild cats, famous cats.....or "dogs", or "pets" .....which lead to other words, and so on. The thread I see on another board is now over 3,000 words long, going on for years.
    I agree that that would be a good choice too! I've seen that working well on other boards too.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  2. The following 6 users say "thanks"


  3. #32
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,527

    Default

    Quote Originally Posted by Sunshine View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Cherie, that’s very very frustrating.
    Is it first come first served, or do they take any number of qualifying patients?

    Since the doc dropped the ball, can he call the study and tell them to consider D avid like a patient who was screened in early August? Or, is it not first come first served?

    The whole process sounds very difficult. It would seem easy if you knew he got the real stuff...I don’t see the value of placebo here. Why not just compare it to a matched group whose only use is of Aricept, or to untreated dementia....
    Each site can only take 5-6 people. If a person does not screen in, they have to screen another. David is in if he passes all of the screening qualifications.

  4. The following 8 users say "thanks"


  5. #33
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    3,930

    Default

    It sounds very stressful, having to compete to be in a study. I wonder if it’s how Cat felt when she had to enter a lottery to use Betaseron as it began to be on the market?

  6. The following 9 users say "thanks"


  7. #34
    Distinguished Community Member
    Join Date
    Oct 2015
    Posts
    987

    Default

    Quote Originally Posted by Sunshine View Post
    This quote is hidden because you are ignoring this member. Show Quote
    It sounds very stressful, having to compete to be in a study. I wonder if it’s how Cat felt when she had to enter a lottery to use Betaseron as it began to be on the market?
    Being in that lottery was stressful. I had already had MS for a long time before Beta became available....and was so hopeful that it would be of serious benefit. Of course -- and like most new drugs- - the publicity around it was that it was "miraculous" and we heard about people "getting up out of their wheelchairs" and walking. Maybe there were one or two..but of course those were the stories told....not all the others for which there was no improvement...but maybe no more deterioration, either. Which of course is/was a good thing...but not as dramatic. Anyway, it was stressful, exciting, hopeful, all at once. Getting that first box, and learning how to give myself shots..and then doing it...stressful. But then it became routine. No miracles for me, but definitely the relapses were at first much less severe..then slowly, over time, stopped. There has always been a slow decline in ability, but even that was much less severe.

  8. The following 8 users say "thanks"


  9. #35
    Distinguished Community Member Cherie's Avatar
    Join Date
    Oct 2006
    Location
    Southeastern NE
    Posts
    1,527

    Default

    I was in the same boat. Because I had been symptomatic for 19 years when diagnosed and was still walking, I was moved to the bottom of the list. Then my doc retired and another would not consider it because I was till walking. Within 4 years I was cane dependent and in a scooter the following year. I am so grateful for what we have learned in the interim about treating early and often. I am grateful that those of us who do not fit the profile of the clinical trial participants are providing "real world" evidence that the meds work for more than a select few.

  10. The following 8 users say "thanks"


  11. #36
    Distinguished Community Member Sunshine's Avatar
    Join Date
    Oct 2006
    Posts
    3,930

    Default

    You are a pioneer Cat. And so are you Cherie.

    When young adults read about these experiences, maybe it will be their push to treat aggressively and early.
    Last edited by Sunshine; 08-03-2018 at 08:24 AM.

  12. The following 7 users say "thanks"


  13. #37
    Distinguished Community Member
    Join Date
    Oct 2015
    Posts
    987

    Default

    I realize I didn't post the GOOD news on here!!!! Remember Tuffy? IMG_0035-1.jpg He's still with us!!! We took him to the vet. She examined him "one last time.....and declared that "it wasn't time...not yet". That, so long as he was eating, drinking, looking for treats....and we were willing to put up with him peeing outside the litterbox (on absorbent pads..just not in the box)...we should take him home and love him for awhile. So we did!! He's still here, just had some tuna, is purring in my lap......

  14. The following 9 users say "thanks"


  15. #38
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,034

    Default

    More excellent news here today! Thank you Cat.

    I am at the salon and it just started to storm. A real t-storm. Lily Cat and the kittens won’t be happy.
    ANN
    There comes a time when silence is betrayal.- MLK

  16. The following 6 users say "thanks"


  17. #39
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    7,899
    Blog Entries
    12

    Default

    That Tuffy is amazing! He's a long way from using up those 9 lives.

    I had understood that he was to be put to sleep. I had been assuming that he was gone and you were just too sad about it to say anything after letting us know that that was scheduled.

    I'm so glad Tuffy's still around.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  18. The following 7 users say "thanks"


  19. #40
    Distinguished Community Member
    Join Date
    Oct 2015
    Posts
    987

    Default

    Quote Originally Posted by agate View Post
    This quote is hidden because you are ignoring this member. Show Quote
    That Tuffy is amazing! He's a long way from using up those 9 lives.

    I had understood that he was to be put to sleep. I had been assuming that he was gone and you were just too sad about it to say anything after letting us know that that was scheduled.

    I'm so glad Tuffy's still around.
    Well, you were right! He WAS scheduled to be put to sleep! We were just so excited to bring him home.....and I thought I'd posted here (I posted somewhere else, too) to shar the good news.... Anyway...we're happy, for now!


Page 4 of 19 FirstFirst 12345678914 ... LastLast

Similar Threads

  1. OT August Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 251
    Last Post: 08-31-2017, 09:36 PM
  2. OT August Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 396
    Last Post: 09-05-2016, 08:43 PM
  3. OT August Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 284
    Last Post: 08-31-2015, 10:27 PM
  4. OT August chit chat 2
    By Howie in forum Multiple Sclerosis
    Replies: 166
    Last Post: 08-31-2014, 04:43 PM
  5. OT August Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 57
    Last Post: 08-30-2012, 08:34 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.