Results 1 to 6 of 6

Thread: Last Man Standing

  1. #1
    Distinguished Community Member
    Join Date
    Jan 2007
    Posts
    512

    Question Last Man Standing

    Am I the last one - my last post is exactly that - and that was back in 2016 Early 2016 at that. I have been here a long time and prayed this day would never come when I checked and no new threads and I stop in every now and then. I hope some one will see this before the forum is lost and gone forever. I am aware of the history, having been here and seen the trials and tribulations ( some caused by people running the forums - no names) and we survived that. So now what?
    Blessings to all
    Alex 44
    Skypilot

  2. The following 2 users say "thanks"


  3. #2

    Default

    I for one...certainly miss people...actually arriving to this spot....I look in other places...and I can not find what was found here......yet to write here now is like reading aloud...when there is no one to hear.....

  4. The following 3 users say "thanks"


  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,821
    Blog Entries
    1

    Default

    ((((((Alex)))))) ~

    It's good to see you here again. How are you feeling? Are you well now that you've completed your treatments? How is your partner? I've thought of and prayed for you both many times. I pray that you are both now well and healed.

    I'm so sorry that this forum isn't active any longer. Most of our forums are empty these days, and it is unfortunate and saddening. But we're still here, and as long as we're still here, BrainTalk will continue. I feel fairly sure of that.

    Maybe what this forum needs is someone to get the party started? Why don't you try that? Start posting and see whether it generates any activity. If old members don't return, perhaps new members will join, if they see activity on the forum.

    Perhaps there is a group on Facebook, where former members hang out. I'm not on Facebook, but if you are, you might search for such a group. I know that several other BT forums gravitated to Facebook.

    Be well. Keep the faith.

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  6. The following 3 users say "thanks"


  7. #4
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,730
    Blog Entries
    12

    Default

    This is just a thought, alex44. If you know anyone with a neurological disorder that is listed here, why not give the URL for the BrainTalk board to that person and explain about what it is? Word of mouth is sometimes a way to jumpstart things a bit.

    There are some people still here though unfortunately it looks as if Chronic Pain needs some contributors.

    These forums have been through some rough times. Glad you're still here. Looks as if hummer hasn't totally given up either.
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  8. The following user says "thanks"


  9. #5
    Distinguished Community Member
    Join Date
    Jan 2007
    Posts
    512

    Default

    Hello All - Glad to see a few responses. Earth Mother to angels - bless you for your concern. To answer your questions, I just got labs ( called an SVR FOR Sustained Viral Response- which will tell if the treatment which took 12 weeks of heck was - Let's just say in my opinion it was just short of Chemo, having had present and passed friends who had cancer. if it comes back clean , I am out of the woods on that one , if not, they talk of repeating it - Don't that I will do if they want to do that. My partner is not well - her legs and ankles and feet are all swollen - took a long time to seek treatment and hope I can keep her on track - a bad situation - Personnaly, I am somewhere is the best I can put it - just take it day to day. How are you? Hope this finds you and your family well and happy. as far as Forums go, in the past I have seen a lot of our members? in another forum, that I will not name as I am unsure of what TOS would have to say. Good luck and maybe this is a start, I got a few people here with this post and will definitely talk it up.

    Blessings
    Alex44
    Skypilot

  10. The following user says "thanks"


  11. #6

    Thumbs up

    It's crazy, Alex. Back in 2000-2005 this forum was jumping with dozens of posts a day, sometimes an hour! It's like it has gone completely dead since then! That's too bad because it was very helpful to people who are suffering from chronic pain! I expected it to be the same or at least busier than it is which is why I came here to try to find out about pain management, or lack thereof, in Nevada and Arizona. 20 people have looked but no one has posted a word. I am really disappointed.

    Did you manage to get off methadone? I remember that was an issue for you a few years back. I have had to increase my dose from what it was a few years ago as the scar tissue just keeps cranking down harder on the nerves and my spinal cord. I do figure I will likely have to take it the rest of my life as it does the job for the most part and I am not getting better so I haven't pushed to change or get off of it. Winter about does me in so I'm thrilled to see little green leaf buds on the trees! Of course, my SAD doesn't help with pain either and the sunshine and impending green explosion of Nature is helping that, too.

    Someone at some point in the methadone post mentioned Suboxin. Warning! It is harder to get off of than methadone or even heroin!! Doctors who are up on the newest info are using Naloxone, but we shall see how it works. Kind of an unknown at this point. I am sure there will be info soon with all the anti-narcotic stuff going around. I just know both my husband and I would be bedridden without pain medications, especially him! So we really need information before we move somewhere. We were considering Oregon until his pain doc told him that by law they would immediately drop his dose by 30% and his pain is barely controlled as it is!! I would get an even bigger reduction! Oregon got sadly crossed off the list. Our one great grandchild with another due in September live there and we would have liked to be part of their lives for the time we have left. Nevada and Arizona are the closest we can get that have dry, fairly warm weather year round, and are affordable. Pain management is an issue, though. Ah well, perhaps we will go to Western Panama or Ecuador, though they aren't terribly wheelchair friendly.

    I sure hope things pick back up here! Take care.

    Gayle
    Last edited by gracie05; 05-05-2017 at 03:05 PM.

Similar Threads

  1. Could this be long standing CJD?
    By lucca2010 in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 1
    Last Post: 10-27-2015, 09:22 AM

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.