Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Lynn wrote: > > The doctors want to follow conventional therapy with > prednisone. I have such a gut check about taking this > med...and wondered how you found doctors who would use > the AP. Is there a website somewhere about Dr. > McPherson Brown and those doctors who follow his > therapies? Hi Lynn, You should start with this site for the Road Back Foundation: http://www.roadback.org/Index1.html The links all have useful information about many aspects of the AP; by checking the " online support " link there, you should be able to locate someone in your area who will be able to give you doctors' names. Best wishes, and welcome, --Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi Lynn, Have a look at our website at http://rheumatic.org and then we can help with any questions. I'll send you a list of doctors by private email - too big to post to the group Welcome to the group Chris. >Good Morning, > >My name is Lynn, I've been lurking for a while. I've >recently been diagnosed with dermatomyositis (one of >40 conditions under Muscular Dystrophy umbrella,) I >also have OA in my knees and feet, degenerative >arthritis in my spine and raynaud's phenomenon. >rheumatoid arthritis runs in my family, though. >Currently, I'm on Celebrex. > >The doctors want to follow conventional therapy with >prednisone. I have such a gut check about taking this >med...and wondered how you found doctors who would use >the AP. Is there a website somewhere about Dr. >McPherson Brown and those doctors who follow his >therapies? I've been looking...short of calling each >rheumy in my HMO plan (which I'll probably do) > >I live in the Northern Virginia area, not too far >outside of Washington, DC. > >thank you for sharing...I've learned a lot! > >Lynn > >===== >The human race has one really effective weapon, and that is laughter. -- Mark Twain > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 I told my daughter that she has ASP and she wants to know exactly what it is and I have gone to so many websites, but they dont explain it in " kid " terms, Can anyone help me with this? She is 11, I dont know how to explain it better than what the " medical terms " are. thanks so much to everyone. Lise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 My son was just rediagnosed from ADHD to Asperger's. He is 10 and I have always been very open to him also but have also had a hard time explaining it to him in ways he can understand without feeling more different than he already does. My mom found some books and DVD's on Asperger's made for kids at the library. We haven't recieved them yet probably tomorrow. We also decided it would be best for us to read\watch them first to make sure they even have anything to do with what he is going through. Anyway that's where we have started I hope this can help you out. I know it can be hard especially when they are upset and want to know what's wrong with them. Keep your head up. Alisha skye333@... wrote: I told my daughter that she has ASP and she wants to know exactly what it is and I have gone to so many websites, but they dont explain it in " kid " terms, Can anyone help me with this? She is 11, I dont know how to explain it better than what the " medical terms " are. thanks so much to everyone. Lise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 There is actually a wonderful book called - Asperger's - What It Means To Me. It's great because, not only does it explain things well, it is also a work book that kids can actually fill in things about themselves. I know they sell it a Future Horizons and they have a web site. Some book stores might have it. > I told my daughter that she has ASP and she wants to know exactly what it is > and I have gone to so many websites, but they dont explain it in " kid " terms, > Can anyone help me with this? She is 11, I dont know how to explain it > better than what the " medical terms " are. > > thanks so much to everyone. > > Lise > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 > > I told my daughter that she has ASP and she wants to know exactly what it is > and I have gone to so many websites, but they dont explain it in " kid " terms, > Can anyone help me with this? She is 11, I dont know how to explain it > better than what the " medical terms " are. > > thanks so much to everyone. > > Lise > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Dear Carol, I had my surgery T2 to L5, A/P in 2002. I also had trouble walking and leaned forward. I don't know if restructuring will help or not, but if you have the surgery and it helps you, I'll know what to do! Understandably, my stride was/is shorter due to less flexibility of the spine. I also have CMT which caused my scoli. Lana From: Carol Cole <magdalineinspades@...> Subject: new and a question Scoliosis Treatment Date: Wednesday, July 23, 2008, 8:18 PM I am new to the group. I'm 57 and had 19 " fusion in 1997, not fused to the secrum but all the way up to the shoulder blade region. It was anterior and posterior major 11 hour surgery. I have not really been able to walk well since, and began having trouble walking upright (falling forward from waist up) right from the beginning. The surgery itself went well, but I am wondering if they did something wrong that caused me to have problems falling forward. PT said my pelvis was stuck in the wrong postion. I walk very slowly (for balance) and can not walk more that 1/2 block. It is becoming increasingly difficult to stand and walk.... not pain but the stress of fighting against gravity. On major disability with very limited abilty to work. New PT (after a fall) ordered exrays and suggested a neurosurgeon with whom I might discuss another surgery. YIKES. They want to reconfigure my spine, take out the first and put it in a different shape. Posterior only, 8 hour surgery this time. Im just wondering... did they do a bad configuration the first time? will this next suggested surgery improve things (if I live through it) Anyone else here had this experience? suggestions where I might go to educate myselF? resources? I'm in a stressful lifestyle, so do not often take the time to try to investigate this topic, just try to keep going, but it gets harder all the time. suggestions welcome I am in Michigan near University of Michigan Hosp Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 Hi Carol, I had a fusion surgery done last year from T10 to L5. A month after I came home from the hospital, I fell and messes up some of the hardware. I had another surgery to fix what I broke and then they put me in a back brace for 5 months. When I got out of it I felt good for a couple of months and then my upper body started to feel very fatigued. I went for PT for about 5 weeks and the exercises I have been doing everyday help me to hold my body upright. My doctor says it is a normal thing to be leaning forward when you walk and you just have to do the exercises and walks as upright as you can. Good luck with whatever you decide. I was 60 when I had my two surgeries. I did not feel I would not survive surgery because I had no choice. I just could not walk from the curve in my back and the spinal stenosis pain. Look for a second opinion if you do not feel confident. I would be looking for a spinal surgeon. Mine is in Clevelnd, OH and they made me go to the hospital in the area that is the level 1 trauma unit. I am sorry PT did not help you as much as it did me. Bev from Aurora, OH > > I am new to the group. I'm 57 and had 19 " fusion in 1997, not fused to the secrum but all the way up to the shoulder blade region. It was anterior and posterior major 11 hour surgery. I have not really been able to walk well since, and began having trouble walking upright (falling forward from waist up) right from the beginning. The surgery itself went well, but I am wondering if they did something wrong that caused me to have problems falling forward. PT said my pelvis was stuck in the wrong postion. I walk very slowly (for balance) and can not walk more that 1/2 block. It is becoming increasingly difficult to stand and walk.... not pain but the stress of fighting against gravity. On major disability with very limited abilty to work. > New PT (after a fall) ordered exrays and suggested a neurosurgeon with whom I might discuss another surgery. YIKES. > They want to reconfigure my spine, take out the first and put it in a different shape. Posterior only, 8 hour surgery this time. > Im just wondering... > did they do a bad configuration the first time? > will this next suggested surgery improve things (if I live through it) > > Anyone else here had this experience? > suggestions where I might go to educate myselF? > resources? > I'm in a stressful lifestyle, so do not often take the time to try to investigate this topic, just try to keep going, but it gets harder all the time. > suggestions welcome > I am in Michigan near University of Michigan Hosp > Carol > > Quote Link to comment Share on other sites More sharing options...
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