Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Does anyone out there who has a speech problem also have difficulty eating. My PLS began with my speech which has gone from bad to worse. Because my muscles around and in my mouth are weak I find it difficult to keep food in my mouth. I will have to go on Ensure or something because my Dr tells me my weight loss is too great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 We've all had hiccups from eating at some time. Well, its sort of the same effect. Words like " feeling stuff " and " I'm so full " fit right in. I use to consume some huge quantities of food and so found myself even not so long ago where I'd just have to have a little more. Then after, I'd always make that comment " I ate too much. " I would cook enough to have leftovers and end up eating it all. Over the last couple of years i've gotten better and actually do end up with leftovers. Why, the other night, I grilled chicken to have for two meals and it actually ended up three. > > > > > > Babs: > > > > > > You mention the prednisone. You might find the poll or survey we > > have > > > going interesting. I do. An interesting split between those on > > > prednisone and those previously on but now off or those who never > > > have been on it. > > > > > > Thats one of the type things we do discuss here periodically and > > get > > > a cross-section of opinions and experiences. We had a very > > > interesting discussion of VATS some time back. > > > > > > It sounds like in your case the PF is secondary to the auto- immune > > > diseases so that the real treatment for you is treating them. If > > > you're only on a little oxygen when exerting yourself, something is > > > obviously working. > > > > > > One thing of value I really get here too is talking to those > > further > > > along than I am. By seeing how they are coping and their strength, > > I > > > realize that even as it progresses life can continue to be lived > > and > > > have value. > > > > > > Also, I will go in February for a very initial transplant > > > consultation at UTSW and its nice knowing someone here who has been > > > through it all and is on the list. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 We've all had hiccups from eating at some time. Well, its sort of the same effect. Words like " feeling stuff " and " I'm so full " fit right in. I use to consume some huge quantities of food and so found myself even not so long ago where I'd just have to have a little more. Then after, I'd always make that comment " I ate too much. " I would cook enough to have leftovers and end up eating it all. Over the last couple of years i've gotten better and actually do end up with leftovers. Why, the other night, I grilled chicken to have for two meals and it actually ended up three. > > > > > > Babs: > > > > > > You mention the prednisone. You might find the poll or survey we > > have > > > going interesting. I do. An interesting split between those on > > > prednisone and those previously on but now off or those who never > > > have been on it. > > > > > > Thats one of the type things we do discuss here periodically and > > get > > > a cross-section of opinions and experiences. We had a very > > > interesting discussion of VATS some time back. > > > > > > It sounds like in your case the PF is secondary to the auto- immune > > > diseases so that the real treatment for you is treating them. If > > > you're only on a little oxygen when exerting yourself, something is > > > obviously working. > > > > > > One thing of value I really get here too is talking to those > > further > > > along than I am. By seeing how they are coping and their strength, > > I > > > realize that even as it progresses life can continue to be lived > > and > > > have value. > > > > > > Also, I will go in February for a very initial transplant > > > consultation at UTSW and its nice knowing someone here who has been > > > through it all and is on the list. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Eating is on top my list of 'things most difficult to do' my list in the order of difficulty would be climbing, walking, any sort of work which requires mobility,talking,etc but since i cannot avoid eating and can afford to be at rest, eating has now become the most difficult thing for me though this was almost unnoticeble earlier it has become very very pronounced now since a year or so, that is after 12 years I have observed that small and frequent meals are best , having fluids and liquids make no difference , my doctor told me what Bruce says the diaphragm get pushed and the lung space gets reduced another conclusion that i have arrived at is that when we eat all the o2 during respiration gets diverted to the digestion process and we get short of o2 for any other activity does this sound crazy?? but i have now reached a stage where even a very little quantity of food makes me breathless and miserable i cant see properly or even think i concentrate on anything and i have to rest but the the saturation falls only marginally how will u explain this ,I feel miserable for an hour or so i plan my eating according to my work schedules any suggestions? ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Eating is on top my list of 'things most difficult to do' my list in the order of difficulty would be climbing, walking, any sort of work which requires mobility,talking,etc but since i cannot avoid eating and can afford to be at rest, eating has now become the most difficult thing for me though this was almost unnoticeble earlier it has become very very pronounced now since a year or so, that is after 12 years I have observed that small and frequent meals are best , having fluids and liquids make no difference , my doctor told me what Bruce says the diaphragm get pushed and the lung space gets reduced another conclusion that i have arrived at is that when we eat all the o2 during respiration gets diverted to the digestion process and we get short of o2 for any other activity does this sound crazy?? but i have now reached a stage where even a very little quantity of food makes me breathless and miserable i cant see properly or even think i concentrate on anything and i have to rest but the the saturation falls only marginally how will u explain this ,I feel miserable for an hour or so i plan my eating according to my work schedules any suggestions? ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Gosh Geeta, That sounds very hard. I had read that eating & breathing becomes difficult but not THAT hard. Would you consider line feeding to keep up your nourishment? I'm not sure of the technicalities but somebody else on this Board could probably give some detail! Regards, in Oz PS I'm very shocked at events in Pakistan & I've no doubt you're all holding your breath to see what eventuates in the aftermath! >> Eating is on top my list of 'things most difficult to> do' > my list in the order of difficulty would be> climbing,> walking, any sort of work which requires> mobility,talking,etc but since i cannot avoid eating> and can afford to be at rest, eating has now become> the most difficult thing for me though this was almost> unnoticeble earlier it has become very very pronounced> now since a year or so, that is after 12 years I> have observed that small and frequent meals are best> , having fluids and liquids make no difference , my> doctor told me what Bruce says the diaphragm get> pushed and the lung space gets reduced another > conclusion that i have arrived at is that when we eat> all the o2 during respiration gets diverted to the> digestion process and we get short of o2 for any other> activity does this sound crazy??> but i have now reached a stage where even a very> little quantity of food makes me breathless and> miserable i cant see properly or even think i> concentrate on anything and i have to rest but the> the saturation falls only marginally how will u> explain this ,I feel miserable for an hour or so > i plan my eating according to my work schedules > any suggestions? > > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Gosh Geeta, That sounds very hard. I had read that eating & breathing becomes difficult but not THAT hard. Would you consider line feeding to keep up your nourishment? I'm not sure of the technicalities but somebody else on this Board could probably give some detail! Regards, in Oz PS I'm very shocked at events in Pakistan & I've no doubt you're all holding your breath to see what eventuates in the aftermath! >> Eating is on top my list of 'things most difficult to> do' > my list in the order of difficulty would be> climbing,> walking, any sort of work which requires> mobility,talking,etc but since i cannot avoid eating> and can afford to be at rest, eating has now become> the most difficult thing for me though this was almost> unnoticeble earlier it has become very very pronounced> now since a year or so, that is after 12 years I> have observed that small and frequent meals are best> , having fluids and liquids make no difference , my> doctor told me what Bruce says the diaphragm get> pushed and the lung space gets reduced another > conclusion that i have arrived at is that when we eat> all the o2 during respiration gets diverted to the> digestion process and we get short of o2 for any other> activity does this sound crazy??> but i have now reached a stage where even a very> little quantity of food makes me breathless and> miserable i cant see properly or even think i> concentrate on anything and i have to rest but the> the saturation falls only marginally how will u> explain this ,I feel miserable for an hour or so > i plan my eating according to my work schedules > any suggestions? > > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Three possible suggestions but certainly the second requires medical advice. 1-You said liquids do the same so I assume then that things like Ensure don't help. Even so just for nutrition you might supplement with some of it. 2-Ok.....now with your problem this one may be a long shot. I have a problem with my upper esophagus sphincter being tight, sometimes referred to as Globus but not always that. At any rate, I reached the stage that if I ate and stood after or leaned forward I gag reflex was set off and I would cough up. Now, amazingly, both my primary and my gastro came to the same conclusion for a solution. Valium (epam generically) will relax the esophagus muscle. You don't take a quantity like you would for anxiety or sleep. But I have to take 2 mg with every meal. It worked on the first meal I tried it and if I almost forget I can feel the problem coming during the meal. ly, I was shocked that it worked for that, but it did. Now, I don't know if you have any muscle tightening (lots of muscles in places we don't know) but if so it might just work. The esophagus is one of our most complex and muscular parts of our body. 3-Have you tried upping your oxygen a little when eating and seen any effect. If that doesn't help, it may disprove your theory on diversion of oxygen and lead back more to the tightening. > > Eating is on top my list of 'things most difficult to > do' > my list in the order of difficulty would be > climbing, > walking, any sort of work which requires > mobility,talking,etc but since i cannot avoid eating > and can afford to be at rest, eating has now become > the most difficult thing for me though this was almost > unnoticeble earlier it has become very very pronounced > now since a year or so, that is after 12 years I > have observed that small and frequent meals are best > , having fluids and liquids make no difference , my > doctor told me what Bruce says the diaphragm get > pushed and the lung space gets reduced another > conclusion that i have arrived at is that when we eat > all the o2 during respiration gets diverted to the > digestion process and we get short of o2 for any other > activity does this sound crazy?? > but i have now reached a stage where even a very > little quantity of food makes me breathless and > miserable i cant see properly or even think i > concentrate on anything and i have to rest but the > the saturation falls only marginally how will u > explain this ,I feel miserable for an hour or so > i plan my eating according to my work schedules > any suggestions? > > > ______________________________________________________________________ ______________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 thanx Bruce, I will test my o2 levels on my oximeter today also i will speak to pulmo abt using Valium , i will also sustitute at least one of my meals with nutri bars or other supplements but the habit of eating a meal is difficult to give up , it has become so bad that after my dinner ,that is the last meal of the day i can do nothing ,walking to the bed room about 15ft away becomes difficult , i can walk but on reaching there i am absolutely breatless i feel i will die!every day i promise myself i wont eat but i end up having a little food. as the day progresses it gets worse, i am at my best early in the morning when my stomach is empty. ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 thanx Bruce, I will test my o2 levels on my oximeter today also i will speak to pulmo abt using Valium , i will also sustitute at least one of my meals with nutri bars or other supplements but the habit of eating a meal is difficult to give up , it has become so bad that after my dinner ,that is the last meal of the day i can do nothing ,walking to the bed room about 15ft away becomes difficult , i can walk but on reaching there i am absolutely breatless i feel i will die!every day i promise myself i wont eat but i end up having a little food. as the day progresses it gets worse, i am at my best early in the morning when my stomach is empty. ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 dear , thanx for your response , if you do not have any problem when eating , u dont have to worry about it, you may never have in future too. YES ULTIMATELY I HAVE TO CHANGE MY EATING HABITS it ia matter of self controll and determination the nutri tion can come im in supplements and nutri bars , psychologically there is nothing as satiating as eating normal food but it cant b helped , this is one more thing in the long list of 'i must give up' i am not a very big eater , and i am avegetarian too but still i will have to give up conventional eating, the sooner the better! yes the Pakistan situation doesnt bode well for them, for us and evryone on this sucontinent, for us it spells unstabilty because there is no democracy ther e and it could lead to escalation in terrorism let us wait and see what kind of GOVT. COMES TO POWER LOVE GEETA ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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