Dan Gottlieb

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Dr. Dan,
I recently saw you on the Reeve site. My problem is that I was diagnosed with transverse myelitis in 1989. They did surgery which did damage to my mylon sheath which also damaged my spinal cord. I'm not sure what really happened to me but I am in a wheelchair because I can not walk, my right hand is in a fist and the worst thing is the constant, unbearable pain. I describe it as feeling like my entire body from my chest down feels like it is "asleep." Constant pins and needles and unbearable pain. I am on Neurontin, baclofen, tramadol, roxicodone, and dilaudid. They control the pain slightly (I can't live without them) but I still describe my pain as a 99 on a 1 to 10 scale! I have gone to pain management but all they did was add the narcotics to my regemin. Still no help for the pain. They got me addicted and charge me for a visit to renew my prescriptions. They turned me into a junie with them as the pusher. Still nothing helps stop the pain. All I do is sleep 18+ Hours per day. They put me on Focalin which is a stimulant but does nothing really for the pain and just makes me jittery. I still sleep too much.
Because I am on medicare I can't see anyoe but the worst doctors and live a life of pain and sleep ad feel like I'm sleeping my like away. I'm on social security ( I lost my job and and my insurance because of the pain). I see the worst specialistsr th who are on my plan. I feel as if my life is being wasted by pain. I have a daughter in college so any moneyI have (none) goes to that. I lost my house because I could no longer afford it. Everything comes before spending money on pain specialists. I ybuy my wheelchairs on eBay and sell some of my meds to help pay for that. Which I know is wrong and illegal but I feel as if I don't have any uchoice! What can I do? I live in NJ right near Kessler and Reeve society but still I have no cure to help the pain. What can I do for help help!! The pain just WONT STOPicy!! All I do is sleep and take my medications. I feel like I am missing out on life. I hate waking up in the morning because I have pain all of the time and no one to help control it and no one to help my pain and no one to help me deal with it and only access to bad doctors! My life is out of control and I need help and can't afford it. I need help and don't know where to turn or what what to do. How do I get help from the Medicare system? Help!!
New Jersey (where Eric Legrand is not the only person in a chair)
  • Posted Tue 26 Aug 2014 06:17 PM EDT
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this situation sounds just awful. How long have you been living like this? Is it worse than it has been? If so, do you know why? I am asking all these questions because I want to get a sense of where we are in this process. If you have been suffering like this but stable, then we have to talk about tools for coping and living life you have even though I am sure you sometimes don't want to.
I would love to move our exchange to the "healing the heart and mind" discussion has I think others could benefit. But if you would rather not, I certainly understand.
Either way, mind giving me this information? Thanks Dan
  • Posted Wed 27 Aug 2014 02:58 PM EDT
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Ihave a website and code that will allow you to download the book for free. Please let me know if you would like that information. Thanks, Jessica Pabst
  • Posted Mon 18 Aug 2014 11:27 AM EDT
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T
Hi. I read the discussions here and I have decided to have a say. I appreciate all the uplifting discussion on being active and athletic, but I am not and never was very physically adapt. I always wanted to be but hard as I tired I am just not athletic. So I keep reading all the stories of people that snowboard, ski and marathon after finding themselves in a wheelchair. I am SO proud for you, but I can't do that. I was reasonably active and fit, and find myself stuck in a chair. I can't run, ski or achieve an spectacular event now as I couldn't before my accident. I am an average person, trying to lose weight, stay healthy and most important become a happy active giving part of society in a wheelchair. I have lost my job and my home and have to live on the disability. I can't invest in special equipment. I can't even afford to modify a car to drive myself. I feel stifled and dependant. I love that some people can peruse special events and talents, but there has to be many people like me that can't even get physical therapy, never mind special activates. Please do not think I begrudge those that have wonderful talents, or abilities. But I don't have finance or abilities. I just want to hear from average folks that are broke and lonely and want to resume some semblance to the caring, giving life we tried to live prior to our accidents. Terrie
  • Posted Wed 30 Jul 2014 09:53 PM EDT
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I ran across this on a friend's facebook page. It's not quite my style of coping, but you may be interested. I'm just offering so you can check it out. No obligation at all. Deborah
http://recordingandlistening.org/try-it-your-first-exercise-writing-the-love-letter
  • Posted Tue 29 Jul 2014 04:41 AM EDT
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that's really interesting stuff. Thank you for sending along

Dan
  • Posted Tue 29 Jul 2014 11:46 AM EDT
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I would like to speak to you about the book I have written to help people with "disabilities." It has now been published and is available on amazon, barnes&noble and trafford.com.

I am trying to get the word out about it and help as many people as I can. I have many tips I have learned over the last 14 years since my accident, positive messages, jokes, importance of staying close to those around you and those you have lost, and the importance of achieving your dreams and staying positive no matter the circumstances.

Please get back to me when you can. Thanks!
  • Posted Wed 25 Jun 2014 12:17 PM EDT
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hi Jessica. I will try to give this book a read ASAP! Thanks.
  • Posted Fri 27 Jun 2014 02:10 PM EDT
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And I am Jessica Pabst
  • Posted Thu 26 Jun 2014 11:51 AM EDT
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Thank you. My book Is "Life From a Sitting-Down Perspective" and the ebook available on Barnes&Noble and Trafford.com is only $5.
  • Posted Thu 26 Jun 2014 11:50 AM EDT
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hi Jesse. If you tell me the name of your book, I will order a copy online and perhaps I can make better recommendations then. But in general, there are several things you can do. Of course there is the social media and in Facebook,, you can pay extra money for a few days to get a "boost" and people who read your page and you could even have it targeted. You could start a webpage with a discussion.. Have a virtual book club.. Of course, you could also hire a publicist, but that can be pretty pricey. You can give talks to schools, parent groups, religious organizations, rehab facilities (for both patients and staff)
anyway, hope that is a good place for you to start. Good luck!
  • Posted Wed 25 Jun 2014 03:16 PM EDT
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a belated happy birthday, Dr.Dan!! God bless you with many more years of bliss and harmony in company of your loving family.....

: sarmi from Kolkata- India
  • Posted Tue 17 Jun 2014 03:44 PM EDT
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Hi....got thrilled to learn....someone from India is close to you, Dan!

My detail:
Mail id: sarmisthasinha12@gmail.com
Cell: +91-9674554409

Offc.Adrss:
Dr.Sarmistha Sinha
Dept.of Physiology
R.G.Kar Medical College & Hospital
1 Khudiram Bose Sarani,
Kolkata-700004
West Bengal, India.

Resi Adrss:
A-2 (ground floor), Block-A
RMO Family Quarters,
R.G.Kar MC&H, Kolkata-700004
India.

Info given.....arrival of the proxy awaited eagerly!

Rgds.

:sarmi [= Sri = Sarmistha = Spinal Cord (Rim) at FB]
  • Posted Wed 18 Jun 2014 03:33 PM EDT
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thank you my dear friend. Perhaps one day we shall meet. In the interim, I have an Indian friend who returns to India every year.. Perhaps if you tell me a bit about where you live I could get the information back to her. It would be nice if we met by proxy!
  • Posted Wed 18 Jun 2014 03:14 PM EDT
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Roe
Happy Birthday, Dan!!! The Bruce Springsteen concert you went to sounds like it was a lot of fun; just sorry you're suffering the day after!
  • Posted Tue 17 Jun 2014 02:39 PM EDT
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recovering after being out until 2 AM at the Springsteen concert. Exhausted, have the beginnings of the cold and I feel like crap. And I would do it again tonight! Best concert I ever saw
  • Posted Tue 04 Sep 2012 02:06 PM EDT
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