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Thread: Last Man Standing

  1. #1
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    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

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  3. #2

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    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.....

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  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((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.

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  7. #4
    Distinguished Community Member agate's Avatar
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    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #5
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    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

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  11. #6

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    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.

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  13. #7
    Distinguished Community Member Jo6's Avatar
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    Hello Alex & all. I don't know how many remember me but I am still here. I had some bad times, in and out of hospital but thank God it's been over a year hospital free!! Still Trying to get my pain meds. straight but I'm still working on it. I have had a time trying to keep a Dr. So many have retired and some have died. So sad. I have to go to my Neuro Friday and I'm not too fond of her. We'll work on it though.
    Take care all. If we all keep trying we should be able to get our membership up. I still believe inspite of some of the bad things I have heard about what has gone on here. I'm glad to see Rose, Hummer & all the other members from long ago.

    take care, Jo6
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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  15. #8
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    Hi All - Yes, I remember you Jo6 - as a nice caring person. I am not well. I got cured of the Hep C. thru the VA - it may not have been chemo but it was 12 weeks of hell. Unfortunately My partner has been in the hospits for the last few days due to extreme swelling and I am worried out of my mind as she seems to be only getting palliative care. they want her to see a gastoentolagist outside the hospital not there don't know why she is so blown up she looks like the goodyear tire guy - I am going to see the patient advocate tomorrow and then maybe a lawyer as she needs more aggressive care - the lasisk has not helped yet but maybe she just need time. I am very depressed, I see her every day - that about sums it up except this house is so empty I hate it. we have been together over 20 years so we are very close. Hope this finds everyone is well and evevryone is as well as they can be.Pleease, if you are so inclined , pray for her.
    Many blessings to all
    Alex44
    Skypilot

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