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Not sure if I have found any of the old timers here but.....

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    Not sure if I have found any of the old timers here but.....

    For those who don't know me, I am Dinkie from the old forum $#% years ago. lol Yeah, it is that long ago. Emily is seventeen years old now and Nolan is thirteen. So much has happened in our lives through the years. As expected for Emily, she lost her ability to walk. She did regain some ability but it is very limited and she uses a walker in the home. She now uses a scooter to get around. Nolan developed multiple tethered spinal cord issues and along with a growth spurt came an eighty degree scoliosis. He had to have his spinal cord severed to prevent any further damage. It was difficult for him to become a paraplegic at the thoracic level now but he is strong as both kids are and we are dealing.

    As for me, things have gone from bad to worse over the years. I too, am no longer able to walk. All fusions absorbed and the only thing holding my spine together is the hardware. We pray it never breaks. I am inoperable and expected to deteriorate even more. All of my limbs are affected now.

    Emily and I have matching scooters. Her's is dressed out with Sonic the Hedgehog and though she wanted to do the same for me I talked her out of it. lol She is/was and always will be a Sonic fan. She has become quite the artist over the years practicing drawing all of the Sega characters, even drawing complete comic books.

    Not knowing if anyone is here I will cut this short because it is difficult for me to sit and type for long length of time and as you will probably remember, I do like to write novels. Oh yeah, I did that too. lol Just never followed through to get it published. Oh well, I will leave it to the kids for when I am gone.

    Need a favor from everyone here. We have entered a contest for a mobility van and we need votes for the next six weeks or so. You can vote daily and you can vote via facebook or use as many emails as you have. (all legal) you can vote here Only registered and activated users can see links., Click Here To Register... This is not our first attempt to win this and actually have come pretty close to the finals. We just never had a huge amount of people to vote for us. Some who made it actually had the help of talk shows to get votes. I think that is a bit unfair and gives some an advantage. Anyway, I will check back to see who is here. maybe a roll call is in order. lol Where is everyone?????????

    #2
    Hi dinkie, there are a couple of us around and I will be sure to give you my vote. It i good to hear from you again as I have wondered how the three of you are doing. I hoped for the best but knew that all three of you had future spinal problems. I can hear in your post that you are the same wonderful mother to Emily and Nolan you have always been despite your own spinal problems.

    I have continued to have more spinal problems and I am hoping they continue to not get much worse but my T4-5 is deciding if it will behave or not. I hope the others that come around now and then stop to respond to your post and put in a vote for your family. Do you have a page on FB so more people can vote for your family. If so give me the link and I will post it on my page to give you more coverage.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

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      #3
      Mark, I did not realize this forum up running again. I was a member since 2000, under TerriRN. I have not seen too many of the oldsters here. Good to see a familiar name.

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        #4
        I've been with forum since 2002 but have not posted in a while. Glad to see Mark is still going strong.It would be nice to see some of the other oldies also!

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          #5
          If you're still around Dinkie Rockhound had a name change due to some issues back a *few* years ago. I decided to check in and found you, MarkN, TerriRN, and Marijo but don't know if any of you are still here. Good to see at least a few familiar names!

          Wish I had seen this post back when it was pertinent. I hope you got the van. Sorry to hear that the kids have deteriorated so much, as well as you.

          My lumbar ADR went really well until about 08 when I started having bad leg pain again. It was discovered in late 09 that the scar tissue that the surgeon cleaned out had come back with a vengeance and was in the epidural space and wrapping around nerves and my cord. Now L2-3 is collapsing and I am getting pretty bad scoliosis. It's scary and too late to fix it now. The discogram was wrong at L2-3 so the doc didn't replace it. He should have. I had successful ADR at C5-6 & 6-7 in 2011. So far it's good. That same summer my husband got broadsided on his motorcycle and is now in a wheelchair. We were in Russia at the time so that's an entire story by itself. I hope things are going well.
          Gayle aka Rockhound aka gracie
          Last edited by gracie05; 05-05-2017, 08:27 AM.

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            #6
            Hello.

            Anybody home at this bar?

            The echoes tell me "No."

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              #7
              Gene, I haven't seen anything of you for years, where have you been. I only look in very occasionally, so its really good to see that you are still around. How have you been. I think last time I heard from or about you, you were just completing an english literature degree!. How long ago was that. Your wife was not well, and I think you worried a lot about your daughter also.
              Do let me know what you have been up to, and if you are the right person I will write more next time..Well there can't be too many pony guys out there.
              So good to see you around again.
              Mary.
              cardiac ablation 1997. prolapsed disc 1992. L5S1 fusion 2003 (failed, bad screw in spinal canal) Lumpectomy 2005, Carpel tunnel bilateral 2005.Prolapses bowel, bladder, uterus, V. Vault rectocele,repaired.2005. Sacral implant failed 2006. further prolapsed bowel. Subsequent ileostomy, removal of colon, rectum,. 2009. removal of bad screw, more metal work L4/5/S1 to stabilise.2010 cervical ADR 2 levels. Hypothyroid. retired 2003, further cervical stenosis problems. on pension& disability

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                #8
                Originally posted by marijo View Post
                Gene, I haven't seen anything of you for years, where have you been. I only look in very occasionally, so its really good to see that you are still around. How have you been. I think last time I heard from or about you, you were just completing an english literature degree!. How long ago was that. Your wife was not well, and I think you worried a lot about your daughter also.
                Do let me know what you have been up to, and if you are the right person I will write more next time..Well there can't be too many pony guys out there.
                So good to see you around again. Mary.
                Marijo, I drop in here once every total eclipse or so...
                I've had a rough time over the past decade... Heart attack in 2006, Quad CABG, a couple of hernia repairs, both hips replaced, and had my implanted spinal hardware removed and replaced. (And I got to keep the old hardware, too! I have it stored in a box...) Recently, I had an issue with major weight loss, and testing showed that I have the markers for Celiac disease... so no more gluten or wheat products.
                Here is a picture of the hardware taken out of my spine; there's a quarter to show the size of the stuff:


                I graduated from the University with a BA degree in English, but a year late due to taking time off for the heart issues. I still have my beloved Pony (Ford Mustang convertible)... it's been parked in my garage every night for the past 25 years or so. Here it is:


                Daughter Holly had scoliosis and received spinal hardware implants in October, 2000. She's fine now, a competitive swimmer who took a Gold medal locally, and competed downstate with Special Olympics this summer; she's worked at Panera Bread for several years.

                Much love and
                Regards from,
                Ponyguy
                Here's my e-mail address: Ponygene@GMail.com

                Comment


                  #9
                  Hey Dinky and everyone. I'm certainly an old timer...in the forum and life. It's encroaching 20 years since I first discovered this forum. I have seen many come and go. Some with good reults, some not so good. I've felt I was a success, though it's been an interesting journey. So far I've had 7 spinal surgeries, all lumbar. Between the spinal and leg injuries I have difficulty walking. I can walk short distances with the help of a cane. I have a scooter for those times when I need to go more than a very short distance. I just had hand controls installed in my truck late last week so I can drive again. I had not been driving for the last two and a half years due to loss of sensations in my legs when braking. My new found sense of independence is a great feeling. Like many here, I've had some difficult days, but I feel so fortunate to have made it this far. Certainly I have lost many of the things I used to love doing, but I've found things just as exciting to replace them. I still play musical instruments quite often...usually twice a week or more. I love ham Radio and am very involved with it. I love seeing my grandkids. When I first came here, my oldest was just a baby. He is now 20. I have eight...six boys and two girls. They are 20,19,18,15,13,9,9 and 6.

                  My best little buddy, Bebop, passed away 31/2 years ago. He was my mini long haired Doxie. We have two dogs and they are very good, but I still miss Bebop. While I have not had a pain free day in many years, I have learned how to deal with it and am continuing to search for methods that may help. In addition to my spinal surgeries and leg surgeries, this past year I had three heart surgeries and my gallbladder removed. Overall I feel pretty good, except for the pain. I will be 68 tomorrow, so I guess with all I've gone through, I'm doing pretty good.

                  I hope you are all doing great. I will check in a bit more often. Everyone have a Great Day!

                  Comment


                    #10
                    Dudes:

                    You are talking into the wind....Mark...the sole holdout for so long, finally gave up and left the forum more than a year ago.

                    I visit on an extremely irregular basis -- been many months.

                    So, not much going on here. Move along, find other pastures, because this one is brown and overgrazed.

                    Sort of sad. It was good place back in 1997/98. Then, progressively worse and BOOM.

                    Luckily, after many, many ghosts and battles with said ghosts, seems I have gotten my life straight. Spinal, not so good, but I can walk, talk, run, work, etc.

                    Even have a handle on the old alcohol crutch that I had been using for a decade or so...but I never turn my back on that beast.

                    Best to all of you, but while this site still has action, the spinal forum is DOA.

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                      #11
                      ((((((Dave)))))) ~

                      It's good to see you here again! Great news that you are feeling better and are back on track in your life.

                      Your post here is the 10th post in this thread, which demonstrates that former members have returned to check in during the past 5 months. While it may not be jumping with hundreds of posts as in days of yore, it's still here to welcome you and other members, whenever you feel like dropping by.

                      So, this forum isn't DOA. Maybe it would become more active if you and others visited more often and aren't discouraged that there aren't hundreds of members posting. Any contact is better than no contact. And the more you all visit and connect, the more active the forum will be.

                      Healing energy for you and all Spinal Forum members on the way ~

                      Love & Light,

                      Rose
                      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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                        #12
                        Seconding what Rose said!

                        Yes, a board will probably die if nobody ever posts on it. One way to revive it would be to pitch in and help it along with a post or several.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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                          #13
                          Gosh, Rose.

                          Can't really argue, but can point at the posts. Anyway, I am actually on a slippery slope at the moment. A VERY VERY close friend just died.

                          I cannot repeat how close.

                          I am actually sipping at a bottle right now. I have only had three sips. I am hoping that is all -- that is next to nothing. Time will tell...

                          Nothing left to do, but smile, smile, smile.

                          Only thing that has kept me somewhat together is Eric Clapton, not sure about it either...

                          Only registered and activated users can see links., Click Here To Register...



                          Love <most> of you!
                          dave
                          Last edited by HellBoundTroll; 10-24-2017, 03:34 PM.

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                            #14
                            ((((((Dave)))))) ~

                            I'm so very sorry that you've lost your dear friend. Grief is one of the slipperiest slopes anyone can traverse in life. The key is to find the healthiest tools to keep us on the right path to healing our broken heart.

                            One thing that has helped me is thinking about what my loved one would want for me, which is what I would want for my loved one, if our roles were reversed. When I'm no longer present on Earth, I don't want my loved ones to grieve into an abyss of sorrow. I don't want them to become severely depressed. I don't want them to neglect their own health and well being.

                            I want my loved ones to remember me with the love we shared and the memories we created together. All of the times we laughed and cried together. Hugged each other, listened to and understood each other. I want them to take care of themselves, to love themselves as I love them, to find comfort in the company of others and in nature, to find joy in the smallest miracles. To live the best life they can until we're reunited in eternity.

                            Our bodies perish, but our spirits soar and live on. This isn't just what I believe. It's what I've experienced.

                            Talk to your friend, just like your friend is right beside you. I feel quite confident that your friend is there. Open your heart and try it.

                            Feel free to open up here ~ that's the purpose of BT. You're not alone.

                            Sending you healing energy and prayers for peace and comfort ~

                            Love & Light,



                            Rose
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              #15
                              Rose:

                              Your note is sheer poetry and wisdom all woven together in a beautiful tapestry.

                              I sincerely appreciate the substantial time and effort you put forth to write to me -- a person you do not even know.

                              Your words are a fantastic help.

                              When I heard about the death, I wanted somehow to make it not so, as though somehow maybe I could have said or done the one thing that would have turned him onto a different, brighter path. Tell him what a beautiful gift he had, had always had.

                              But that was not to be. I still feel as if all the air has "whoosed" out of the world, leaving me gasping. That is a very distressing feeling, but you have helped make it bearable.

                              Again, my heartfelt thank you.
                              dave

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