Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 I had renal failure when I was 20. Following that I was on a no eggs, no citrus, and no sodium diet for a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water. I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well. Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mes vancouver, bc Canada web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Aletta Hi from Revelstoke, happy to know you`re still feeling somewhat better.I thought I`d help out with the plain language list but I can`t figure out how to add to your list! I really am computer illiterate, anyway i really don`t know of a word to describe the feeling of muscle stiffness after holding a position for a while although experience it every day.Rigidity does`nt really cover it, I`ve read of stiff man syndrome but don`t really know what that`s supposed to mean(but the men are welcome to it) I will look up the pyramidal tract info in my text books ........refers to hypereflexia, reflexes such as Babinski as far as I remember.....you`re doing a great job! Do you know what it is that causes the so called coat hanger pain? Again I experience it but don`t know why .Is it due to increased muscle tone,or to hyper ventilation and altered blood chemistry, or some kind of neuropathy? Maybe someone in the group might know.I really feel the need to understand where all my symptoms come from and why. I know you don`t feel the need to "sweat the small stuff" but I have to nit pick and try to understand every little detail. Hope this makes sense ....I`m dizzyer than usual these last few days Love Marg Manson a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water.I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well.Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mesvancouver, bc Canadaweb: http://aletta.0catch.comIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Hey Marg, Just give it to me in any format you want and I'll add it in. At Tuesday 6/11/02 09:17 PM, you wrote: Aletta Hi from Revelstoke, happy to know you`re still feeling somewhat better.I thought I`d help out with the plain language list but I can`t figure out how to add to your list! I really am computer illiterate, anyway i really don`t know of a word to describe the feeling of muscle stiffness after holding a position for a while although experience it every day.Rigidity does`nt really cover it, I`ve read of stiff man syndrome but don`t really know what that`s supposed to mean(but the men are welcome to it) I suspect there is a medical term, and doctors may even have asked if I experienced it (to which I would have been able to do little more than shrug), whichis why this particular list is important, even crucial to communicate properly with your doctor, you bet he will use medicalese just out of habit, that is not a failing, but it is an obstacle. I will look up the pyramidal tract info in my text books ........refers to hypereflexia, reflexes such as Babinski as far as I remember.....you`re doing a great job! Do you know what it is that causes the so called coat hanger pain? I'm guessing low BP and blood struggling to move to the brain? Again I experience it but don`t know why .Is it due to increased muscle nope, not that .I've actaully made spectacular gains in upper body muscle, which has made no difference at all. tone,or to hyper ventilation and altered blood chemistry This is what I'm thinking. , or some kind of neuropathy? Maybe someone in the group might know.I really feel the need to understand where all my symptoms come from and why. I know you don`t feel the need to " sweat the small stuff " but I have to nit pick and try to understand every little detail. Feel the same way. If I know what is a work I might be able to cleverly counter it by relearning and designing habits or just by telling it what to do - never underestimate the power of your own will. Hope this makes sense ....I`m dizzyer than usual these last few days Re: dizzyness, (perhaps even balance problems) you might want to discuss the Buscopan, since it worked well for me in this regard. I couldn't imagine ever walking the ten blocks I did today a few weeks ago. It is also used in Meniere's disease (the cause of which is not well understood either). Obviously the dizziness was related to something other than just OH. The OH still manifests if I stand/sit for long or get up quickly. aletta mes vancouver, bc Canada web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 HI I am new to this group. I have been diagnosed with PD and I have had lupus for 30 years (44 now). Also have lot's of fainting (diagnosed with neurally mediated hypotension) So I think i have MSA or something like it becuase of other symptoms (too many to go into!!!) Had some kidney problems from the lupus but very mild. How do you deal with the fainting/low blood pressure since salt and other stuff are bad? Ruth renal failureI had renal failure when I was 20. Following that I was on a no eggs, no citrus, and no sodium diet for a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water.I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well.Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mesvancouver, bc Canadaweb: http://aletta.0catch.comIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Water (if my bloodvessels are a little flat drink more, if they are plump - stop.) Move often, but slowly and deliberately (my rule recline and rest 12 midnigh to 12 noon - move around from 12 noon to 12 midnight) Pay a great deal of attention to exhaling (tendency is to hold breath when tasks are difficult - this often brings me to a faint) Do all your laughing sitting down (too much too fast) Eat small amounts often during the day (digestion takes much energy and is draining) - my rule no more than 2 oz. at a time - or 6 oz. liquid Use your toes to grip, wear shoes that let you - also good to pick items up with avoiding that whole bending over head-rush thing (toes like hands need all that movement to aid in returning blood up against gravity - this keeps me out of compression hose, and now I'm doing it more I have fewer spider veins on my ankles If I don't pee and anything becomes swollen I stop drinking water until I do (after 24 hours go to ER) As long as I maintian the discipline, it is all in the manageable range - hope that helps At Wednesday 6/12/02 11:13 AM, you wrote: HI I am new to this group. I have been diagnosed with PD and I have had lupus for 30 years (44 now). Also have lot's of fainting (diagnosed with neurally mediated hypotension) So I think i have MSA or something like it becuase of other symptoms (too many to go into!!!) Had some kidney problems from the lupus but very mild. How do you deal with the fainting/low blood pressure since salt and other stuff are bad? Ruth renal failure I had renal failure when I was 20. Following that I was on a no eggs, no citrus, and no sodium diet for a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water. I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well. Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mes vancouver, bc Canada web: http://aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Aletta, this was helpul to me thanks for the information. Connie Greer --- Aletta Mes alettames@...> wrote: > Water (if my bloodvessels are a little flat drink > more, if they are plump - > stop.) > Move often, but slowly and deliberately (my rule > recline and rest 12 > midnigh to 12 noon - move around from 12 noon to 12 > midnight) > Pay a great deal of attention to exhaling (tendency > is to hold breath when > tasks are difficult - this often brings me to a > faint) > Do all your laughing sitting down (too much too > fast) > Eat small amounts often during the day (digestion > takes much energy and is > draining) - my rule no more than 2 oz. at a time - > or 6 oz. liquid > Use your toes to grip, wear shoes that let you - > also good to pick items up > with avoiding that whole bending over head-rush > thing (toes like hands need > all that movement to aid in returning blood up > against gravity - this keeps > me out of compression hose, and now I'm doing it > more I have fewer spider > veins on my ankles > If I don't pee and anything becomes swollen I stop > drinking water until I > do (after 24 hours go to ER) > > As long as I maintian the discipline, it is all in > the manageable range - > hope that helps > > At Wednesday 6/12/02 11:13 AM, you wrote: > >HI I am new to this group. I have been diagnosed > with PD and I have had > >lupus for 30 years (44 now). Also have lot's of > fainting (diagnosed with > >neurally mediated hypotension) So I think i have > MSA or something like it > >becuase of other symptoms (too many to go into!!!) > Had some kidney > >problems from the lupus but very mild. How do you > deal with the > >fainting/low blood pressure since salt and other > stuff are bad? > > > >Ruth > > renal failure > > > >I had renal failure when I was 20. Following that > I was on a no eggs, no > >citrus, and no sodium diet for a full three years. > I still cook without > >adding salt, avoid pop (soda) like the plague, > likewise anything with a > >high salt content (most prepared foods, including > ensure). I'm a bit of a > >purist (don't confuse that in any way with > vegetarianism), and like to > >cook with unprocessed ingredients. I don't like > supplements (many contain > >sodium). After I was started on Duvoid (for > bladder strength), the > >pharmacist told me to drink lots of water and add > salt in my diet - > >checked with my doctor, who told me to drink the > water but leave the salt, > >salt just makes your thirsty and drink more water. > I've no problem > >drinking enough water. > > > >I do get sent often for tests for diabetes (almost > as though they're > >expecting it). My mother is diabetic and > occasionally I'll check my level > >when I am visiting her, it has always ben low. > Since I prefer to not > >tease out other ailments I don not use refined > sugars. The sweetest thing > >I have during a day would be milk, or a piece of > very dark chocolate. I > >do have the advantage of having only a few working > tastebuds (3 I think), > >and the pain in my mouth and face making eating a > chore not a > >pleasure. You're right about the Carnation Instant > Breakfast (sugarless) > >everybit as nutritionally sound as ensure and less > sodium as well. > > > >Saw the Gynecologist today, turns out I had a large > polyp, which she > >removed right away. She told me to expect a lot of > bleeding - she was not > >kidding. The rest seemed well enough, so I remain > with constipation and > >immotility as the cause for my abdominal pain. > Better safe than > >sorry. Walked about ten blocks again today. Not > so tipsy, but still have > >problems getting my feet to go where I want them > (unintended hesitancy - > >is there a technical word). Also, what is the > medical term for stiffness > >all over after remaining in one position for longer > than 5 minutes? > > > >aletta mes > >vancouver, bc Canada > >web: http://aletta.0catch.com > >If you do not wish to belong to shydrager, you may > >unsubscribe by sending a blank email to > > > >shydrager-unsubscribe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 HEy, great advice. I do all those things but have to work on the water drinking. I need to eat better again too!! (how boring!!) I can still move around fairly well, but the fainting thing is a real downer. Adding in the tremors, imbalance, dystonia, etc., quite a chellenge to do things but I know what you mean about crow barring yourself out the door but it is really important.I see that many on the posting don't take sinemet, I am on a half pill every three hours, it helps somewhat but not with some of the more challenging problems. Do other things work for you? Ruth renal failure I had renal failure when I was 20. Following that I was on a no eggs, no citrus, and no sodium diet for a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water. I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well. Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mes vancouver, bc Canada web: http://aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Well, let's start with attitude. Eating better is not boring, it is a challenge to discover new foods and ways of preparing them, that can be an adventure. I don't take sinemet, but I also have only slight tremour in my hands when I'm very tired, so I space out activities in bite-sized pieces, and that usually eliminates tremours for the most part. The buscopan did stop my vertigo (which I thought had to do with low BP, but suprisingly it was a seperate and trreastable entity) as luck would have it it also cleared the ringing in my ears (to a tolerable degree) so I not longer have the stress of needing to strain and lip read. The only antidotes I know for the stiffness if is forcing yourself to move, and I eat a lot of hot spicyfoods, which always make me feel better. Despite the nay-sayers, I will take something for pain relief, because being able to move is better than lying curled up in a ball from agony. Having lots of small activities to keep busy with 9art, craft, gardening)keeps the depression caused by loss of being fully functional at bay. I try each day to 'accomplish' something, propegating a plant, duting a bookshelf, reading a book etc. Just don't plan them ahead, what I can do one day I might not be able to do the next. I take days off too, today is my day off, I'm being as self indulgent as possible. The dishes can just wait and my son can make himself a sandwich. At Wednesday 6/12/02 08:58 PM, you wrote: HEy, great advice. I do all those things but have to work on the water drinking. I need to eat better again too!! (how boring!!) I can still move around fairly well, but the fainting thing is a real downer. Adding in the tremors, imbalance, dystonia, etc., quite a chellenge to do things but I know what you mean about crow barring yourself out the door but it is really important.I see that many on the posting don't take sinemet, I am on a half pill every three hours, it helps somewhat but not with some of the more challenging problems. Do other things work for you? Ruth renal failure I had renal failure when I was 20. Following that I was on a no eggs, no citrus, and no sodium diet for a full three years. I still cook without adding salt, avoid pop (soda) like the plague, likewise anything with a high salt content (most prepared foods, including ensure). I'm a bit of a purist (don't confuse that in any way with vegetarianism), and like to cook with unprocessed ingredients. I don't like supplements (many contain sodium). After I was started on Duvoid (for bladder strength), the pharmacist told me to drink lots of water and add salt in my diet - checked with my doctor, who told me to drink the water but leave the salt, salt just makes your thirsty and drink more water. I've no problem drinking enough water. I do get sent often for tests for diabetes (almost as though they're expecting it). My mother is diabetic and occasionally I'll check my level when I am visiting her, it has always ben low. Since I prefer to not tease out other ailments I don not use refined sugars. The sweetest thing I have during a day would be milk, or a piece of very dark chocolate. I do have the advantage of having only a few working tastebuds (3 I think), and the pain in my mouth and face making eating a chore not a pleasure. You're right about the Carnation Instant Breakfast (sugarless) everybit as nutritionally sound as ensure and less sodium as well. Saw the Gynecologist today, turns out I had a large polyp, which she removed right away. She told me to expect a lot of bleeding - she was not kidding. The rest seemed well enough, so I remain with constipation and immotility as the cause for my abdominal pain. Better safe than sorry. Walked about ten blocks again today. Not so tipsy, but still have problems getting my feet to go where I want them (unintended hesitancy - is there a technical word). Also, what is the medical term for stiffness all over after remaining in one position for longer than 5 minutes? aletta mes vancouver, bc Canada web: http://aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
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