Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the last two visits I was getting worse (well it IS a progressive disease), but that this time I am no worse and seem to be a little bit better. So he feels that I have stabilized and probably won't get much worse. I think that is great, but I wonder how he can make a statement like that. I've had PLS for 11 years and had my dx since 1999. Its funny, but when I was first dx the thought of having to use a cane or walker, let alone a wheelchair was terrifying. Now I use my power wheelchair and I love it. If I can maintain this level of mobility I will be very happy. Everything is relative I guess. I have learned to adapt to where I am. I'm ok with it. The doctor also said that my lung capacity, breathing, etc were 100% so he has no fear of ALS, another thing to be grateful for. The speech therapist did find that my swallowing is becoming just slightly off. My speech is still fine. So I feel very lucky. I am wondering, has anyone else been told they are " stable " . Does this happen often? I have always thought that PLS was a progressive disease although the rate of progress differs. I wonder if he was just saying that to make me feel better? Bonnie G - phoenix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 Bonnie, thats wonderful news. I have been saying since day one, less is best. The mre you push your body, the worse off (for me) it gets. For having pls for 30 years, I know a little bit of what expierence has taught me. Keep doing what works! Rita Conditon Stable Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the last two visits I was getting worse (well it IS a progressive disease), but that this time I am no worse and seem to be a little bit better. So he feels that I have stabilized and probably won't get much worse. I think that is great, but I wonder how he can make a statement like that. I've had PLS for 11 years and had my dx since 1999. Its funny, but when I was first dx the thought of having to use a cane or walker, let alone a wheelchair was terrifying. Now I use my power wheelchair and I love it. If I can maintain this level of mobility I will be very happy. Everything is relative I guess. I have learned to adapt to where I am. I'm ok with it. The doctor also said that my lung capacity, breathing, etc were 100% so he has no fear of ALS, another thing to be grateful for. The speech therapist did find that my swallowing is becoming just slightly off. My speech is still fine. So I feel very lucky. I am wondering, has anyone else been told they are " stable " . Does this happen often? I have always thought that PLS was a progressive disease although the rate of progress differs. I wonder if he was just saying that to make me feel better? Bonnie G - phoenix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 Bonnie: What a positive message you sent. That is great news. Three years after my first bulbar symptoms, I had speech improvement and then stablized for three years. That was followed by an acceleration. Can't figure out why either happened. Sure would like to re-stablize though. Eva > > Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the last two visits I was getting worse (well it IS a progressive disease), but that this time I am no worse and seem to be a little bit better. So he feels that I have stabilized and probably won't get much worse. I think that is great, but I wonder how he can make a statement like that. > I've had PLS for 11 years and had my dx since 1999. Its funny, but when I was first dx the thought of having to use a cane or walker, let alone a wheelchair was terrifying. Now I use my power wheelchair and I love it. If I can maintain this level of mobility I will be very happy. > Everything is relative I guess. I have learned to adapt to where I am. > I'm ok with it. The doctor also said that my lung capacity, breathing, etc were 100% so he has no fear of ALS, another thing to be grateful for. > The speech therapist did find that my swallowing is becoming just slightly off. My speech is still fine. So I feel very lucky. > I am wondering, has anyone else been told they are " stable " . > Does this happen often? I have always thought that PLS was a progressive disease although the rate of progress differs. I wonder if he was just saying that to make me feel better? > Bonnie G - phoenix > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Rita, I meant stable in the brain! LOL I stablized for awhile with this disease but think I am on another progression right now but have been stressing myself out but I'll slow down--one way or another ;o) Sue Me > Sue Me: > > It is not all that unusual to be told your stable, I had no change in my condition for a good 5 years. I think it was because I had eliminated a lot of stress in my life. > > Now it's " old age " that is slowing me down along with the PLS, but that's life. > > Rita > > > > Bonnie, > > I have never been told I am stable, > > Sue Me > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Sue Me, I knew what you meant, but I was trying to be nice. Stress makes such a difference in our over all feelings. From the sounds of it, most people are still able to work, and that puts your body in a stressful situation. Once I decided to retire and I collected SSD the pressure was off. For the person who asked about telling people, well what we did ( & I) sat our children down, explained to them what was happening and to just live our life the same and see what happens. I wrote letter's to close friends and family, and told them the same thing, that I was still the same person, that my body and brain were changing, and to treat me the same. Some to this day are over protective, and although it annoys me, I count my blessing that people still care enough to be concerned. If people not really all that close ask me, I tell a rare form of Lou Gehrigs disease, and that's enough I don't drag it out, no reason! Have a Happy Turkey Day! Love & Hugs Rita Re: Conditon Stable Rita, I meant stable in the brain! LOL I stablized for awhile with this disease but think I am on another progression right now but have been stressing myself out but I'll slow down--one way or another ;o) Sue Me > Sue Me: > > It is not all that unusual to be told your stable, I had no change in my condition for a good 5 years. I think it was because I had eliminated a lot of stress in my life. > > Now it's " old age " that is slowing me down along with the PLS, but that's life. > > Rita > > > > Bonnie, > > I have never been told I am stable, > > Sue Me > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Rita, Thanks for trying to be nice! ;o)I was just trying to make a little joke! I know what stress can do to you! 7 years ago I worried that I had to show everyone what I could do and crashed and burned, and now-- I know what I can do and what anyone else thinks just doesn't matter! Hugs and Happy Turkey Day to you too! Sue Me > Sue Me, I knew what you meant, but I was trying to be nice. Stress makes such a difference in our over all feelings. From the sounds of it, most people are still able to work, and that puts your body in a stressful situation. Once I decided to retire and I collected SSD the pressure was off. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Rita, Thanks for trying to be nice! ;o)I was just trying to make a little joke! I know what stress can do to you! 7 years ago I worried that I had to show everyone what I could do and crashed and burned, and now-- I know what I can do and what anyone else thinks just doesn't matter! Hugs and Happy Turkey Day to you too! Sue Me > Sue Me, I knew what you meant, but I was trying to be nice. Stress makes such a difference in our over all feelings. From the sounds of it, most people are still able to work, and that puts your body in a stressful situation. Once I decided to retire and I collected SSD the pressure was off. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 > > Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 > > Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 > > Some good news. I went to my neurologist for my semi annual check up and he seems to feel that my condition is " stable " . He said the > > > > Quote Link to comment Share on other sites More sharing options...
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