Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Kathy - That is the one reason I can do pilates -- is my back is VERY stable in most of the exercises. There are a couple of exercises that involve rotation but there are always modifications -- there is someone in my class who cannot do this move. Now, I do pilates mostly on the reformer machine which adds in an element of strength training to the mix which is great. Pilates really works on developing your core muscles which gives your spine more protection/stability (in layman's terms!). My studio offers rehab classes as well as advanced classes for the " able bodied! " . I have neuro deficits in one leg and pilates has improved my leg strength as well as improved my knee pain significantly (which was caused from muscle imbalance) and flexibility. Honestly, it's been the one form of rehab exercise that for the first time I did not injure myself doing -- but I started slowly and do it consistently. See my physio's website below for more info on the machines I am talking about (reformer machines). Note that some of the moves in the pics are advanced which I likely will never be able to do! The great thing about this form of exercise is any exercise can be modified. In our classes we all have different issues with our bodies and hence some of our exercises are individualized. I have also had to use a pillow to lie on since my spinal fusion this last summer when we are lying on our back. I have chronic low back pain as well, and aching legs which now only bothers me when I walk too far (which I guess itsn't really that far!). http://www.bodyworxphysio.com To: tetheredspinalcord From: kmoulton@... Date: Fri, 25 Mar 2011 13:37:02 -0400 Subject: Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Thanks Dee, Before dx, I was doing step-aerobics 6-7 days a week. I used the highest step and absolutely loved it and was addicted. That was one of the most difficult aspects to get used to - no cardio exercise, at least that I could find that didn't do me in. I loved exercising. Kathy Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Kathy:    Re. cardio exercise: my gym has an arm bike that I occasionally use for cardio. It also has a rope pull machine where you sit and pull on a never-ending rope. Both can really get the old heart rate up and you can set the resistance. I also use the elliptical trainer (without the arm levers) for cardio even though I'm supporting most of my weight on my arms. These days just trundling my bod around with the walker is cardio for me. Ask your trainer or PT for cardio suggestions. ________________________________ To: tetheredspinalcord Sent: Fri, March 25, 2011 11:35:03 AM Subject: Re: Pilates  Thanks Dee, Before dx, I was doing step-aerobics 6-7 days a week. I used the highest step and absolutely loved it and was addicted. That was one of the most difficult aspects to get used to - no cardio exercise, at least that I could find that didn't do me in. I loved exercising. Kathy Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Kathy - can you swim? That is the only cardio I can do that doesn't hurt my back. I think we are all so different and it's just a matter of finding out what works for you. Dee To: tetheredspinalcord From: sailorsu@... Date: Fri, 25 Mar 2011 11:56:28 -0700 Subject: Re: Pilates Kathy: Re. cardio exercise: my gym has an arm bike that I occasionally use for cardio. It also has a rope pull machine where you sit and pull on a never-ending rope. Both can really get the old heart rate up and you can set the resistance. I also use the elliptical trainer (without the arm levers) for cardio even though I'm supporting most of my weight on my arms. These days just trundling my bod around with the walker is cardio for me. Ask your trainer or PT for cardio suggestions. ________________________________ To: tetheredspinalcord Sent: Fri, March 25, 2011 11:35:03 AM Subject: Re: Pilates Thanks Dee, Before dx, I was doing step-aerobics 6-7 days a week. I used the highest step and absolutely loved it and was addicted. That was one of the most difficult aspects to get used to - no cardio exercise, at least that I could find that didn't do me in. I loved exercising. Kathy Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Yes, Kathy -- that is the one thing I miss so much too -- I used to do long distance biking, hiking, bike trips (what I miss the most), running when I was young and on and on.... swimming and pilates is what keeps me sane now as at least I am getting to do something and am so thankful I can at least do those things. To: tetheredspinalcord From: kmoulton@... Date: Fri, 25 Mar 2011 14:35:03 -0400 Subject: Re: Pilates Thanks Dee, Before dx, I was doing step-aerobics 6-7 days a week. I used the highest step and absolutely loved it and was addicted. That was one of the most difficult aspects to get used to - no cardio exercise, at least that I could find that didn't do me in. I loved exercising. Kathy Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Break out some Jane Fonda! I started Monday LOL Subject: RE: Pilates To: tetheredspinalcord Date: Friday, March 25, 2011, 3:34 PM Yes, Kathy -- that is the one thing I miss so much too -- I used to do long distance biking, hiking, bike trips (what I miss the most), running when I was young and on and on.... swimming and pilates is what keeps me sane now as at least I am getting to do something and am so thankful I can at least do those things. To: tetheredspinalcord From: kmoulton@... Date: Fri, 25 Mar 2011 14:35:03 -0400 Subject: Re: Pilates Thanks Dee, Before dx, I was doing step-aerobics 6-7 days a week. I used the highest step and absolutely loved it and was addicted. That was one of the most difficult aspects to get used to - no cardio exercise, at least that I could find that didn't do me in. I loved exercising. Kathy Yoga Hi Dee, Please forgive my memory or lack thereof: I can't recall if you have chronic pain or residual deficits from a tether. If you do - Pilates still helps? I've always wanted to try this type of exercise - actually for years I've wanted to do this and kick-boxing (yeah, I know kick boxing is out - couldn't do it physically even if I wanted to), but Pilates ... maybe? I have to be a bit careful because I'm not supposed to twist because of the intrathecal pump's catheter that winds from the back to the pump in the abdomen, but beyond that my only no-no's are not stretching the cord, etc. It's always looked like no matter what exercise you do with Pilates, you stretch you back though - false? Any help would be wonderful. Thanks - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Jackie -- I have a physiotherapist who uses pilates in her practice for rehab --- that is the main modality she uses one on one and she also offers group classes, some focusing on rehab. I have been able to get my pilates covered for this reason. The classes I go to are very expensive as they only have up to 6 in a class and use the Reformer Machines -- about $20 a class and I go twice a week. Regular mat based pilates run around $10-12 a class at a different local studio. I have found the reformer machines much better for those with rehab/spinal issues -- this is what I would recommend you look for. If you are seeking out a pilates studio make sure they are experienced in dealing with injuries, which they should be if they are properly certified. Here is the website for the studio I go to, just to give you an idea of what I'm talking about with regard to the machines they use -- but sorry, I'm in Canada! http://www.bodyworxphysio.com/pilates#!__pilates This form of exercise has been invaluable to me and I have never injured myself -- whereas any other time I tried gym based rehab programs, etc, it was just a matter of time before something went wrong. Dee To: tetheredspinalcord From: jpentland@... Date: Fri, 29 Apr 2011 07:48:53 -0400 Subject: Re: advice? HI I was wondering what is the cost of doing pilates? It is some thing that I interested take care jackie Re: advice? Thank you for all the responses. It has indeed been difficult to get appropriate medical care. Since my diagnosis in 2004, drs have generally responded that my condition is not so rare that they do not know what it is, but it is uncommon enough that they do not know how to treat it. There is so much more information available now than just 7 years ago. I am doing pilates 2x a week; once a week a group back class (there are two of us) and once a week private session. I am getting stronger, but that is not saying much from where I started. I am actively trying to get an appointment and establish primary care. I hope to find the right doctor that will communicate with the NS who did the surgery and any other specialists that I may need. It is completely aggravating that insurance dictates which drs you can see. I am starting for square one with this insurance plan and none of my previous health providers are a part of this new plan. I just started today with a pt with someone who specializes in pelvic care and am paying direct pay since my insurance will not cover this. It is incredibly helpful to read your posts and learn what other people are doing for treatment. It really helps to understand my condition and what questions to ask my drs since it is apparent that the medical world is still learning how to treat this. And many of us were not accurately diagnosed until later in life. I know that I need to be patient, but am obviously having difficulty to be patient. I knew it wouldn't be easy but never thought it would this hard. I truly appreciate the input and I hope to continue to heal. Peace, Carol > > > > > > > Hello, > > > > I am now six months post-op and am looking for guidance. I am jumping > > through hoops trying to get appropriate medical care. The problem is that > > there are two Pediatric Neurosurgeons where I live. One who will not see > > adult patients and the other who has a policy of not attending to patients > > that he did not operate. I had my surgery out-of-state when I had Kaiser > > insurance which I was paying via COBRA. Therefore, I cannot see the drs who > > performed my surgery. > > > > I was finally seen by the doctor whose policy is not to attend to patients > > who he did not perform surgery. He cannot (or will not) advise me to what to > > expect in my recovery. He would not prescribe any medication or extend my > > disabled parking permit. He tells me this must be done through primary care. > > Therefore, I am seeking a primary for further care. > > > > My concern is this: I don't even know what questions to ask. And if I > > cannot get advice from a doctor who is knowledgeable about spina bifida > > conditions, how am I going to get medical advice from someone who is not? > > > > I am not even close to my pre-surgery state. I cannot walk for more than 10 > > to 15 minutes without severe muscle fatigue. My perineum is still numb from > > the surgery. My legs/feet are significantly number than they were pre-op. I > > have constant pain level 2-3, like having sore muscles all the time. This > > discomfort is present all the time but not necessarily interfering with my > > abilities and adls (though I delegate unloading the dishwasher and laundry > > to my children as these tasks and occasionally needing assistance with my > > shoes from my husband). I do have shooting burning pain down my legs and > > occasionally in my feet - though I had this before, it is more constant. My > > sacrum hurts most of the time, especially after sitting. But my legs aren't > > strong enough to keep me standing, leaving me to suffer through my work day. > > Is this all to be expected? What medications should I discuss with my new > > primary care physicians? Should I get fmla documentation to cut back my work > > hours so I am not " pushing through the pain " ? What on-going treatment > > options should I look into? In addition, I am having troubles with bowel > > movements. I am very dependent on fiber supplementation to help bulk and > > move my bowels. I do not have the muscle strength or proper sensation to > > push smaller movements out and am straining a lot. I am managing this > > through psyllium fiber and am not constipated. > > Any insight for questions I should ask my new primary care physician is > > appreciated. I think it is definitely time to consider medication. > > Thank you, Carol > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 Hi Jackie, The mat back class only costs $15. The instructor uses lots of props to support and modify exercises. There are only two of us and it is definitely the best deal in town. I have also partcipated yoga back classes in the past where the poses are either modified or focused on core-building excercises. I pay $55/hr for a private pilates lessons using the reformer. Compared to physical therapy that costs $120/hr that my insurance does not cover, this too is a great deal. A good pilates instructor will observe your body's abilities and choose appropiate exercise. Right now, I feel that I need to be " supervised " to do the exercises right so that I don't injure myself. I would not recommend a video unless you are advanced/skilled and strong. Finding a pilates instructor has been easier than finding a doctor... I had surgery at Kaiser Oakland. It was a local Kaiser doctor who referred me to his friend Oakland. So, I did use the underground doctor buddy system to get the surgery. But now I no longer have Kaiser insurance and am starting all over. Nonetheless, regardless of my insurance and lack of a doctor for my post-operative recovery, I am actively finding ways to take care of myself. And frankly, I could not do what I am doing without the huge support of my husband. I have never been so dependent on someone which has certainly been difficult for me. I am so lucky to have this support and incredibly grateful. The recovery has been both a physical and emotional roller coaster. Best in health, Carol > > > > > > > > > > > Hello, > > > > > > I am now six months post-op and am looking for guidance. I am jumping > > > through hoops trying to get appropriate medical care. The problem is that > > > there are two Pediatric Neurosurgeons where I live. One who will not see > > > adult patients and the other who has a policy of not attending to patients > > > that he did not operate. I had my surgery out-of-state when I had Kaiser > > > insurance which I was paying via COBRA. Therefore, I cannot see the drs who > > > performed my surgery. > > > > > > I was finally seen by the doctor whose policy is not to attend to patients > > > who he did not perform surgery. He cannot (or will not) advise me to what to > > > expect in my recovery. He would not prescribe any medication or extend my > > > disabled parking permit. He tells me this must be done through primary care. > > > Therefore, I am seeking a primary for further care. > > > > > > My concern is this: I don't even know what questions to ask. And if I > > > cannot get advice from a doctor who is knowledgeable about spina bifida > > > conditions, how am I going to get medical advice from someone who is not? > > > > > > I am not even close to my pre-surgery state. I cannot walk for more than 10 > > > to 15 minutes without severe muscle fatigue. My perineum is still numb from > > > the surgery. My legs/feet are significantly number than they were pre-op. I > > > have constant pain level 2-3, like having sore muscles all the time. This > > > discomfort is present all the time but not necessarily interfering with my > > > abilities and adls (though I delegate unloading the dishwasher and laundry > > > to my children as these tasks and occasionally needing assistance with my > > > shoes from my husband). I do have shooting burning pain down my legs and > > > occasionally in my feet - though I had this before, it is more constant. My > > > sacrum hurts most of the time, especially after sitting. But my legs aren't > > > strong enough to keep me standing, leaving me to suffer through my work day. > > > Is this all to be expected? What medications should I discuss with my new > > > primary care physicians? Should I get fmla documentation to cut back my work > > > hours so I am not " pushing through the pain " ? What on-going treatment > > > options should I look into? In addition, I am having troubles with bowel > > > movements. I am very dependent on fiber supplementation to help bulk and > > > move my bowels. I do not have the muscle strength or proper sensation to > > > push smaller movements out and am straining a lot. I am managing this > > > through psyllium fiber and am not constipated. > > > Any insight for questions I should ask my new primary care physician is > > > appreciated. I think it is definitely time to consider medication. > > > Thank you, Carol > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 I am supposed to start back-care yoga next week. They charge a monthly fee (but only have back-care 1x a week) or a session fee of 15.00. I'm looking forward to the class. This particular studio also offers chair yoga (but only on Saturday and I don't want to take a class in the middle of the day on the weekend). I think yoga, Pilates, and other types of exercise studios are realizing there's a market for modified exercise classes. I spoke with my neuro-rehab at length about what I should not do, can try to do, and should attempt. Kathy Re: pilates Hi Jackie, The mat back class only costs $15. The instructor uses lots of props to support and modify exercises. There are only two of us and it is definitely the best deal in town. I have also partcipated yoga back classes in the past where the poses are either modified or focused on core-building excercises. I pay $55/hr for a private pilates lessons using the reformer. Compared to physical therapy that costs $120/hr that my insurance does not cover, this too is a great deal. A good pilates instructor will observe your body's abilities and choose appropiate exercise. Right now, I feel that I need to be " supervised " to do the exercises right so that I don't injure myself. I would not recommend a video unless you are advanced/skilled and strong. Finding a pilates instructor has been easier than finding a doctor... I had surgery at Kaiser Oakland. It was a local Kaiser doctor who referred me to his friend Oakland. So, I did use the underground doctor buddy system to get the surgery. But now I no longer have Kaiser insurance and am starting all over. Nonetheless, regardless of my insurance and lack of a doctor for my post-operative recovery, I am actively finding ways to take care of myself. And frankly, I could not do what I am doing without the huge support of my husband. I have never been so dependent on someone which has certainly been difficult for me. I am so lucky to have this support and incredibly grateful. The recovery has been both a physical and emotional roller coaster. Best in health, Carol > > > > > > > > > > > Hello, > > > > > > I am now six months post-op and am looking for guidance. I am jumping > > > through hoops trying to get appropriate medical care. The problem is that > > > there are two Pediatric Neurosurgeons where I live. One who will not see > > > adult patients and the other who has a policy of not attending to patients > > > that he did not operate. I had my surgery out-of-state when I had Kaiser > > > insurance which I was paying via COBRA. Therefore, I cannot see the drs who > > > performed my surgery. > > > > > > I was finally seen by the doctor whose policy is not to attend to patients > > > who he did not perform surgery. He cannot (or will not) advise me to what to > > > expect in my recovery. He would not prescribe any medication or extend my > > > disabled parking permit. He tells me this must be done through primary care. > > > Therefore, I am seeking a primary for further care. > > > > > > My concern is this: I don't even know what questions to ask. And if I > > > cannot get advice from a doctor who is knowledgeable about spina bifida > > > conditions, how am I going to get medical advice from someone who is not? > > > > > > I am not even close to my pre-surgery state. I cannot walk for more than 10 > > > to 15 minutes without severe muscle fatigue. My perineum is still numb from > > > the surgery. My legs/feet are significantly number than they were pre-op. I > > > have constant pain level 2-3, like having sore muscles all the time. This > > > discomfort is present all the time but not necessarily interfering with my > > > abilities and adls (though I delegate unloading the dishwasher and laundry > > > to my children as these tasks and occasionally needing assistance with my > > > shoes from my husband). I do have shooting burning pain down my legs and > > > occasionally in my feet - though I had this before, it is more constant. My > > > sacrum hurts most of the time, especially after sitting. But my legs aren't > > > strong enough to keep me standing, leaving me to suffer through my work day. > > > Is this all to be expected? What medications should I discuss with my new > > > primary care physicians? Should I get fmla documentation to cut back my work > > > hours so I am not " pushing through the pain " ? What on-going treatment > > > options should I look into? In addition, I am having troubles with bowel > > > movements. I am very dependent on fiber supplementation to help bulk and > > > move my bowels. I do not have the muscle strength or proper sensation to > > > push smaller movements out and am straining a lot. I am managing this > > > through psyllium fiber and am not constipated. > > > Any insight for questions I should ask my new primary care physician is > > > appreciated. I think it is definitely time to consider medication. > > > Thank you, Carol > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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