Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi Dale, I am new to PLS-friends, I should start by saying hello to all. I decided to join PLS-friends in order to read up and gather information for my father. My father was diagnosed with PLS two years ago in June. I have shared many of everyones stories with my family and I know my father somehow feels good about knowing that someone else understands and could relate to what he is physically going through and emotionally. I hope that by sharing your stories, comments and advise he will open up. He really tries to spare us from the worries. Dale, within the last 3 months my father has had two occassions that sound similiar to your experience. He tried getting out of bed and almost felt completely paralyzed from his left side, including his arm and leg. He could barely pull off his right leg off the bed and was unable to get himself up. With the help of my mother and a walker he managed to get himself to the restroom on time. It sure was a scary experience and I couldn't stop to wonder how quickly is it progressing? I'm sure my father feels the same way, though he'll never tell. It sure seems too quick and this concerns me. As I continue reading what everyone has to share, I realize that everyone progresses at different speeds. I just wish it was a lot slower. Hang in there and God bless. Liz F. dale wrote: Folks, Last night my left side was very bad and I couldn't hardly walk even with a walker. I just started getting that surreal feeling and think, this can't be happening, I'll wake up soon.... I have had this less then a year and a half and was wondering for you " old timers " ... Does that feeling ever go away? My guess is " no " but it just got me thinking. It just doesn't seem " real " , and for me, so fast... thanks to all, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 I guess you get used to it, but you never accept it. Before I got this X#@ & disease I had a deep sence that something big was going to happen in my life. Being optimistic, I thought I'd win the lotery. In a way I guess I did ... a bad one. What are the odds of getting this disease? About the same odds as a woman in her late 90's getting married? I have other feeling too ... I have a gut feeling there will be a cure in time for us. Am I the only one feeling this????? Donna > Folks, > > Last night my left side was very bad and I couldn't hardly walk even > with a walker. I just started getting that surreal feeling and think, this > can't be happening, I'll wake up soon.... I have had this less then a year > and a half and was wondering for you " old timers " ... Does that feeling ever > go away? My guess is " no " but it just got me thinking. It just doesn't > seem " real " , and for me, so fast... > > thanks to all, > > dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Thanks Liz and welcome to a wonderful group, is there anyway to get your dad on the list? Most of us find it easier to unload/whine/complain/ask questions to others that totally understand the problems vs. " burdening " the family. The other thing we do is counseling, it really helps. It's like my writing those long winded letters I do now and then. Helps one focus and really figure out what is truly bothering one self. take care and say hi to your dad from another fast progressing person with this " slow " progressing disease... Oh, and if he would want, he is more than welcome to just email me if he doesn't want to get on the list right now. dale Re: Does this feeling ever go away? > Hi Dale, > > I am new to PLS-friends, I should start by saying hello to all. I decided to join PLS-friends in order to read up and gather information for my father. My father was diagnosed with PLS two years ago in June. I have shared many of everyones stories with my family and I know my father somehow feels good about knowing that someone else understands and could relate to what he is physically going through and emotionally. I hope that by sharing your stories, comments and advise he will open up. He really tries to spare us from the worries. > > Dale, within the last 3 months my father has had two occassions that sound similiar to your experience. He tried getting out of bed and almost felt completely paralyzed from his left side, including his arm and leg. He could barely pull off his right leg off the bed and was unable to get himself up. With the help of my mother and a walker he managed to get himself to the restroom on time. It sure was a scary experience and I couldn't stop to wonder how quickly is it progressing? I'm sure my father feels the same way, though he'll never tell. It sure seems too quick and this concerns me. As I continue reading what everyone has to share, I realize that everyone progresses at different speeds. I just wish it was a lot slower. > > Hang in there and God bless. > > Liz F. > > > dale wrote: > Folks, > > Last night my left side was very bad and I couldn't hardly walk even > with a walker. I just started getting that surreal feeling and think, this > can't be happening, I'll wake up soon.... I have had this less then a year > and a half and was wondering for you " old timers " ... Does that feeling ever > go away? My guess is " no " but it just got me thinking. It just doesn't > seem " real " , and for me, so fast... > > thanks to all, > > dale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 You've all heard the expression: " In your dreams. " I've had symptoms since '94 and I've NEVER had a dream that included my wheelchair. In my dreamws, I don't even have a limp. Man.......... you should see me run! Usually, I wake up when I fall down. Anyone else? B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 But I mean landing on your feet! > I don't know what your talking about, I still " fly right down " the stairs > now and then! > > dale > > Re: Does this feeling ever go away? > > > > Hi Dale! > > > > I've had my PLS symptoms since the early 90's. I get a feeling > > similar to yours, when I'm sitting down or laying down for a while > > that I'll just be able to jump up and walk briskly. And sometimes > > when I'm at the top of the stairs I feel like I will be able to just > > fly right down. Then the bubble pops and I have to say, that's > > right, I've got this little problem. So then I do my usual " take it > > slow " . And sometimes I find myself watching other people walk and I > > think, that looks so easy, why can't I do that. I think it's pretty > > normal to have these thoughts because we use to be able to do these > > things. Quote Link to comment Share on other sites More sharing options...
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