Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 As for myself, I never dreamed it could get so bad. Absolutely NO balance. Sitting on anything that is not contoured is dangerous! I use my walker to lift and drag myself from my wheelchair to the bed. My biceps are incredible! Complete paralysis from the waist down. Then add stiffness on top of that, and you've got a real scary thing. Dragging my legs along is like trying to drag two concrete pillars along! Trying to get them on and off of the bed is something else. All I can say is that I manage. I wish the paralysis would keep me from feeling the burning pain that is excruciating! My point is that it can get real bad. Marcie In a message dated 11/8/2004 8:02:00 PM Central Standard Time, carrieland2@... writes: VCL, I think you're missing the point. If you're able to "walk off" the stiffness, you are luckier than most and have a milder case than most. I think most of us here do as much as we can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Thanks Kathy. I know people for the most part have good intentions. It's just impossible to know how bad this can get until it happens to that person. Five years ago, when this first happened to me, I never dreamed it could last so long and continue to get worse. We can put a man on the moon, transplant a heart, clone sheep and cats (possibly humans), but they can't figure out good symptomatic relief for stiff legs!! Go figure!! Marcie In a message dated 11/8/2004 8:36:07 PM Central Standard Time, etna@... writes: Marcie Sounds like you get all the exercise you can handle just getting from point A to B . I think VCL means well though that if people with this disease can exercise at all it definitely will help. I too have difficulty dragging my legs around all day but the stretches I am able Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Marcie Sounds like you get all the exercise you can handle just getting from point A to B . I think VCL means well though that if people with this disease can exercise at all it definitely will help. I too have difficulty dragging my legs around all day but the stretches I am able to do help tremendously with stiffness and spasms. That morning stiffness is a toughy though...it is a dangerous time of day for me to just get out of bed to the kitchen (barelly, with two canes dragging my left leg). Out of the house is a wheel chair for sure but I feel very blessed to be mobile at all. Before diagnosis (3 1/2) years ago would walk lots with dogs or with husband and worked out @ a gym whenever possible but it didn't hold back this disease for long. I went undiagnosed for probably 15 years or so and over exercising and pushing myself probably did more harm than good. We have to find that fine balance and go with our bodies (which are usually saying " dont go anywhere ) Really hope things turn around for you Marcie...that is my prayer for you. Kathy On 8-Nov-04, at 7:16 PM, marciemjm@... wrote: > As for myself, I never dreamed it could get so bad. Absolutely NO > balance. Sitting on anything that is not contoured is dangerous! I > use my walker to lift and drag myself from my wheelchair to the bed. > My biceps are incredible! Complete paralysis from the waist down. > Then add stiffness on top of that, and you've got a real scary thing. > Dragging my legs along is like trying to drag two concrete pillars > along! Trying to get them on and off of the bed is something else. > All I can say is that I manage. I wish the paralysis would keep me > from feeling the burning pain that is excruciating! > > My point is that it can get real bad. > > Marcie > > > In a message dated 11/8/2004 8:02:00 PM Central Standard Time, > carrieland2@... writes: > > > VCL, I think you're missing the point. If you're able to " walk off " > the > stiffness, you are luckier than most and have a milder case than most. > I > think most of us here do as much as we can. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 I hear ya Marcie...many frustrations with this disease Kathy On 8-Nov-04, at 8:30 PM, marciemjm@... wrote: > Thanks Kathy. I know people for the most part have good intentions. > It's just impossible to know how bad this can get until it happens to > that person. Five years ago, when this first happened to me, I never > dreamed it could last so long and continue to get worse. > > We can put a man on the moon, transplant a heart, clone sheep and cats > (possibly humans), but they can't figure out good symptomatic relief > for stiff legs!! Go figure!! > > Marcie > > > In a message dated 11/8/2004 8:36:07 PM Central Standard Time, > etna@... writes: > > > Marcie > > Sounds like you get all the exercise you can handle just getting from > point A to B . I think VCL means well though that if people with this > disease can exercise at all it definitely will help. I too have > difficulty dragging my legs around all day but the stretches I am able > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. I was completely paralyzed on my right side for several weeks, but my husband and mother made me get up and walk to the table and eat. My left hand is useless because I am right-handed, and I made a mess trying to feed myself - and crying the entire time. But, the absolute worse was when I went totally blind for 4 weeks. I just blubbered like a baby all 4 weeks. So, I empathize, but I also know you have to force yourself to do things. Right now, I swim 3-4 days a week. Putting on my swimming suit and taking it off wet is a real challenge for me and drains my energy. So, I have been through it all and the word I can use is persistence. I am sorry if I hurt someone's feelings. But, with MS, you have to have a backbone to stand up to people and to the doctors. Peace! VCL VCL, I think you're missing the point. If you're able to " walk off " the stiffness, you are luckier than most and have a milder case than most. I think most of us here do as much as we can. ________________________________________________________________ Juno Platinum $9.95. Juno SpeedBand $14.95. Sign up for Juno Today at http://www.juno.com! Look for special offers at Best Buy stores. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 hi i certainly agree with you. i have been in the same place as you, and it is horrible not knowing if it is going to get better. the head things that go with this stinking thing is bad. you have a right to feel useless cos i know i was. i've only been on ldn for 5 days but they have been the best of my life. don't force yourself to much it doesn't make you any better. they tell me fatigue managment is best,they should get it first i think. sometimes forcing yourself works but why force yourself to just get upset. raelene -------Original Message------- From: low dose naltrexone Date: 11/10/04 10:35:29 low dose naltrexone Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. I was completely paralyzed on my right side for several weeks, but my husband and mother made me get up and walk to the table and eat. My left hand is useless because I am right-handed, and I made a mess trying to feed myself - and crying the entire time. But, the absolute worse was when I went totally blind for 4 weeks. I just blubbered like a baby all 4 weeks. So, I empathize, but I also know you have to force yourself to do things. Right now, I swim 3-4 days a week. Putting on my swimming suit and taking it off wet is a real challenge for me and drains my energy. So, I have been through it all and the word I can use is persistence. I am sorry if I hurt someone's feelings. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I must again respond. Your comment that "you have to have a backbone" suggests that you believe many people could overcome their disabilities by simply applying more effort. That is a bit insulting and also quite naive. Because you were able to push through any particular level of disability just doesn't mean that someone else can do the same. For three years I had no feeling on the bottom of my feet. That is something that could not be resolved with "backbone". Some things, including paresis and paralysis, aren't necessarily going to respond to a strong will. Reeves would have been walking before his death if that were the case. If it were a matter of backbone many cancer patients would have survived their illnesses instead of succumbing. Backbone or not, are bodies are limited. Many of the people in this group are doing a great job of continuing their lives with serious challenges facing them on a day to day basis. Persistance is what keeps all of us going instead of hiding under the covers all day. We are here to help each other, hopefully with specific advice about specific issues. And generally we try to stay somewhere in the LDN arena. A specific practice that helps the early morning stiffness would be helpful to many of us. Dory's "Just keep swimming" from "Finding Nemo" doesn't help anyone at all. We already know we have to keep swimming. We do it every day. JT ----- Original Message ----- From: manchester_terrier@... low dose naltrexone Sent: Tuesday, November 09, 2004 4:05 PM Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Bless you VCL! Kathy On 9-Nov-04, at 5:05 PM, manchester_terrier@... wrote: > , > > I understand that the MS is different for each individual patient. > My point > was that, after having had MS for 27 years, I have had to force > myself to do > things I did not want to do. I was completely paralyzed on my right > side for > several weeks, but my husband and mother made me get up and walk to > the table > and eat. My left hand is useless because I am right-handed, and I > made a mess > trying to feed myself - and crying the entire time. But, the > absolute worse > was when I went totally blind for 4 weeks. I just blubbered like a > baby all 4 > weeks. So, I empathize, but I also know you have to force yourself > to do > things. Right now, I swim 3-4 days a week. Putting on my swimming > suit and > taking it off wet is a real challenge for me and drains my energy. > So, I have > been through it all and the word I can use is persistence. I am > sorry if I > hurt someone's feelings. But, with MS, you have to have a backbone > to stand up > to people and to the doctors. > > Peace! > > VCL > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Yep, you have to have a backbone to stand up to your neuro and DEMAND an LDN script. And any nay saying people, too. ----- Original Message ----- From: low dose naltrexone Sent: Tuesday, November 09, 2004 20:30 Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS I must again respond. Your comment that "you have to have a backbone" suggests that you believe many people could overcome their disabilities by simply applying more effort. That is a bit insulting and also quite naive. Because you were able to push through any particular level of disability just doesn't mean that someone else can do the same. For three years I had no feeling on the bottom of my feet. That is something that could not be resolved with "backbone". Some things, including paresis and paralysis, aren't necessarily going to respond to a strong will. Reeves would have been walking before his death if that were the case. If it were a matter of backbone many cancer patients would have survived their illnesses instead of succumbing. Backbone or not, are bodies are limited. Many of the people in this group are doing a great job of continuing their lives with serious challenges facing them on a day to day basis. Persistance is what keeps all of us going instead of hiding under the covers all day. We are here to help each other, hopefully with specific advice about specific issues. And generally we try to stay somewhere in the LDN arena. A specific practice that helps the early morning stiffness would be helpful to many of us. Dory's "Just keep swimming" from "Finding Nemo" doesn't help anyone at all. We already know we have to keep swimming. We do it every day. JT ----- Original Message ----- From: manchester_terrier@... low dose naltrexone Sent: Tuesday, November 09, 2004 4:05 PM Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 JT, I am sorry that you have been insulted by my remarks. I shall stop. Peace! VCL Yep, you have to have a backbone to stand up to your neuro and DEMAND an LDN script. And any nay saying people, too. ----- Original Message ----- From: low dose naltrexone Sent: Tuesday, November 09, 2004 20:30 Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS I must again respond. Your comment that "you have to have a backbone" suggests that you believe many people could overcome their disabilities by simply applying more effort. That is a bit insulting and also quite naive. Because you were able to push through any particular level of disability just doesn't mean that someone else can do the same. For three years I had no feeling on the bottom of my feet. That is something that could not be resolved with "backbone". Some things, including paresis and paralysis, aren't necessarily going to respond to a strong will. Reeves would have been walking before his death if that were the case. If it were a matter of backbone many cancer patients would have survived their illnesses instead of succumbing. Backbone or not, are bodies are limited. Many of the people in this group are doing a great job of continuing their lives with serious challenges facing them on a day to day basis. Persistance is what keeps all of us going instead of hiding under the covers all day. We are here to help each other, hopefully with specific advice about specific issues. And generally we try to stay somewhere in the LDN arena. A specific practice that helps the early morning stiffness would be helpful to many of us. Dory's "Just keep swimming" from "Finding Nemo" doesn't help anyone at all. We already know we have to keep swimming. We do it every day. JT ----- Original Message ----- From: manchester_terrier@... low dose naltrexone Sent: Tuesday, November 09, 2004 4:05 PM Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Dear , It is very encouraging to hear you have survived M.S. for 27 years. I too, find some sort of water execise imperative to my quality of life with M.S. I choose water aerobics,stretching exercise, LDN and vitamins for stabilty, and so far it is working! God Bless, Deemanchester_terrier@... wrote: ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. I was completely paralyzed on my right side for several weeks, but my husband and mother made me get up and walk to the table and eat. My left hand is useless because I am right-handed, and I made a mess trying to feed myself - and crying the entire time. But, the absolute worse was when I went totally blind for 4 weeks. I just blubbered like a baby all 4 weeks. So, I empathize, but I also know you have to force yourself to do things. Right now, I swim 3-4 days a week. Putting on my swimming suit and taking it off wet is a real challenge for me and drains my energy. So, I have been through it all and the word I can use is persistence. I am sorry if I hurt someone's feelings. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL> ATTACHMENT part 2 message/rfc822 From: Landau low dose naltrexone Subject: [low dose naltrexone] Subject: Re: LDN - MSDate: Tue, 9 Nov 2004 02:00:34 +0000VCL, I think you're missing the point. If you're able to "walk off" thestiffness, you are luckier than most and have a milder case than most. Ithink most of us here do as much as we can. ________________________________________________________________Juno Platinum $9.95. Juno SpeedBand $14.95.Sign up for Juno Today at http://www.juno.com!Look for special offers at Best Buy stores.__________________________________________________Do You ?Tired of spam? has the best spam protection around http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Best advise I've heard in a long time Larry, remember we're paying the Doc's to listen to us! From: LarryGC [mailto:larrygc@...] Sent: Wednesday, November 10, 2004 1:02 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS Yep, you have to have a backbone to stand up to your neuro and DEMAND an LDN script. And any nay saying people, too. ----- Original Message ----- From: low dose naltrexone Sent: Tuesday, November 09, 2004 20:30 Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS I must again respond. Your comment that "you have to have a backbone" suggests that you believe many people could overcome their disabilities by simply applying more effort. That is a bit insulting and also quite naive. Because you were able to push through any particular level of disability just doesn't mean that someone else can do the same. For three years I had no feeling on the bottom of my feet. That is something that could not be resolved with "backbone". Some things, including paresis and paralysis, aren't necessarily going to respond to a strong will. Reeves would have been walking before his death if that were the case. If it were a matter of backbone many cancer patients would have survived their illnesses instead of succumbing. Backbone or not, are bodies are limited. Many of the people in this group are doing a great job of continuing their lives with serious challenges facing them on a day to day basis. Persistance is what keeps all of us going instead of hiding under the covers all day. We are here to help each other, hopefully with specific advice about specific issues. And generally we try to stay somewhere in the LDN arena. A specific practice that helps the early morning stiffness would be helpful to many of us. Dory's "Just keep swimming" from "Finding Nemo" doesn't help anyone at all. We already know we have to keep swimming. We do it every day. JT ----- Original Message ----- From: manchester_terrier@... low dose naltrexone Sent: Tuesday, November 09, 2004 4:05 PM Subject: Re: [low dose naltrexone] Subject: Re: LDN - MS ,I understand that the MS is different for each individual patient. My point was that, after having had MS for 27 years, I have had to force myself to do things I did not want to do. But, with MS, you have to have a backbone to stand up to people and to the doctors.Peace!VCL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I am sorry Marcie that you have so much trouble with your legs. On other hand I wish I can put myself to the bed and be able to get out of it as well. My legs are in constant spasms, almost like in fetus position, I just hope that with using LDN this might improve. I also have burning...these days it is much less than before, and sometimes when I take glucosamine for number of days the burning lessens. Zora Trinidad WI > As for myself, I never dreamed it could get so bad. Absolutely NO balance. > Sitting on anything that is not contoured is dangerous! I use my walker to > lift and drag myself from my wheelchair to the bed. My biceps are incredible! > Complete paralysis from the waist down. Then add stiffness on top of that, Quote Link to comment Share on other sites More sharing options...
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