Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Bart, Welcome to the group, but sorry about your diagnosis. There is one other person strictly one-side affected. Perhaps she will contact you. For me, it's mostly my legs that are affected, but my hands are slightly weaker than 3 years ago when I first went to NIH for their research. Hang in there, Bart, and stick around. You'll find this fine group very informative, supportive, and friendly. Laurel PLS I've just been diagnost with this, but my nuero said I am not typical. It only affects my left arm,hand,leg and foot. The bad thing is I'm left handed. Any one else had this problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 I don't know who the " other " person is, but I am only affected on my right side and have been since at least 1986 or 1987. Dolores PLS > > > I've just been diagnost with this, but my nuero said I am not > typical. It only affects my left arm,hand,leg and foot. The bad thing > is I'm left handed. Any one else had this problem? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 Hi Bart Mine also is only my right side ,but my speech and rapid tongue movement is affected .They have you wiggle your tongue back and forth to see how fast it can move .I beleive they call this Bulbar 4 yrs. now started with the slurred speech the rest followed GEO (i was 55 now 58) PLS > > > I've just been diagnost with this, but my nuero said I am not > typical. It only affects my left arm,hand,leg and foot. The bad thing > is I'm left handed. Any one else had this problem? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Hi Bart, Welcome aboard the " Ship in Waiting " . Waiting for the cure that is! We folks never give up. We keep each other encouraged until the day comes when we will land this ship forever. My left side is affected the most. I sometimes drag my left foot and my left arm is weaker than my right. But I'm sure it could be worse. You are not alone. Again, welcome. God Bless Yolanda PLS I've just been diagnost with this, but my nuero said I am not typical. It only affects my left arm,hand,leg and foot. The bad thing is I'm left handed. Any one else had this problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Wow, what an amazing story! I do not have PLS or ALS! I am 27 years old and I teach Pre-K in a private school in Sand Springs, OK. My dad just found out last month that he probably has ALS. I just check my e-mail everyday and read the posts so I can learn as much as possible about these diseases. He has another doctor's appointment January 26th and my brother is going with my parents and he is going to ask questions and hopefully gets some answers. I have learned so much over the past month reading all the messages in this group. What a supportive family! I am lucky to have found this group! Jodi > Dave Nunn; > Dear Dave, My hat is off to you, your wife and your family. I being a fellow > PLS 'ers have a favorite saying " Done That, Been There " in reference to the > many symptoms of PLS. I have difficulty sometimes making my left hand type and > my fingers roam the keyboard hitting the wrong keys and dissolving my work in > progress. Let me tell you a little about me. I copied and saved your story. > > Hobbies Pastimes > > At age 60 Dec.3 , 97 I have one favorite hobby-Thinking of all the wonderful > things I have done and accomplished up to now. Even though now accomplishments > may not be as interesting to talk about or as spectacular I still have > accomplishments, goals and satisfactions daily. I have a wonderful wife and > two great sons and one daughter -in-law .I limit TV to 2 hr at night while in > craftmatic bed. I have C D Player. I talk to a few friends on the phone > periodically. I play the stock market prudently study before I buy or sell > (almost daily monitoring). I run the computer-few games, correspondence, stock > portfolios, networking via e-mail with friends, relatives and like patients > with similar doses .We go out to eat often, picnics in summer, travel four > times a year to our Florida condo, sometimes abroad run about the neighborhood > within 3 miles in my electric cart. I find time to manage our five single > family home income properties. When home I answer my wife's business phone if > she's not in. And periodically I may run copies and make mailings. This is > less lately as Carol sees the struggle it takes. We have a two acre yard > looking over bank of lake Erie with a view of sunsets people would kill for. > The view is also visible as I sit in adjustable bed. It's on second floor > looking out 8 foot wide glass door facing deck off bedroom, If that view gets > stale I look left from my bed to a woods view through another 8 foot wide > glass door to deck off bedroom also. Please don't envy me. You can see beauty > in any view you have. It's all a matter of attitude and being satisfied with > yourself and satisfied with what you have. I like photographs, music ( used to > have my own band)age 16 to 24. > I like drawing ( was draftsman by trade).Brief background- from high school I > went to drafting, worked my way through college, into engineering, purchasing > agent to highly technical research equipment manufacturers representative > (traveling four states and Canada). I then became a licensed Real Estate > Broker and my wife and I started our own business. I was forced to retire in > 89 and close the office (sold the building I had designed and physically > assisted in building including drywall, woodwork, exterior Swiss Chalet trim, > scuffle climbing, painting, staining, landscaping etc). > I always liked interior or exterior decorating and design right down to color > schemes. > > My sons are chip off the old block and then some. Don 37 has MBA in marketing > and has had interesting positions from paper boy to theater usher, working way > through college, to account executive at radio station to manager of > automobile museum in Naples Florida. The automobiles are valued at millions > of dollars each. Son 35 went the gamma of self employed landscaper > working his way through college getting degree in marketing. Now he's a flight > attendant and an international traveler with Northwest Air. He has been for 12 > years. My wife and I get free air travel because of him. > > An update March 1, 1999: I spend all my waking hours in a three wheel cart. I > too Dave occasionally let out a whale which comes from no where. I think it's > triggered by a yawn and it seems like air gasping to get back into my lungs. I > have had symptom progression ever so slowly and consistently without remission > since 1978. I was misdiagnosed as M/S and then in 1988 properly diagnosed PLS > after a barrage of tests. I now at 61 depend on my wife for transferring, > personal hygiene and all physical movement such as turning from side to back > in bed etc. We still live our life and travel in spite of it. I am used to > being put on an airplane via a straightback . > I publish a support letter called Synapse for PLS friends. This is an > interactive one. Participants have shared progression of their symptoms from > onset of the disease. I've studied and compared one to another and developed a > symptom progression graph. I am willing to share this study with anyone with > PLS or with the desire to research PLS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Jodi if you would like i can put your dads info on my chart Age ancestry occupation LH or RH and family history of neurological diseases GEO Re: PLS Wow, what an amazing story! I do not have PLS or ALS! I am 27 years old and I teach Pre-K in a private school in Sand Springs, OK. My dad just found out last month that he probably has ALS. I just check my e-mail everyday and read the posts so I can learn as much as possible about these diseases. He has another doctor's appointment January 26th and my brother is going with my parents and he is going to ask questions and hopefully gets some answers. I have learned so much over the past month reading all the messages in this group. What a supportive family! I am lucky to have found this group! Jodi > Dave Nunn; > Dear Dave, My hat is off to you, your wife and your family. I being a fellow > PLS 'ers have a favorite saying " Done That, Been There " in reference to the > many symptoms of PLS. I have difficulty sometimes making my left hand type and > my fingers roam the keyboard hitting the wrong keys and dissolving my work in > progress. Let me tell you a little about me. I copied and saved your story. > > Hobbies Pastimes > > At age 60 Dec.3 , 97 I have one favorite hobby-Thinking of all the wonderful > things I have done and accomplished up to now. Even though now accomplishments > may not be as interesting to talk about or as spectacular I still have > accomplishments, goals and satisfactions daily. I have a wonderful wife and > two great sons and one daughter -in-law .I limit TV to 2 hr at night while in > craftmatic bed. I have C D Player. I talk to a few friends on the phone > periodically. I play the stock market prudently study before I buy or sell > (almost daily monitoring). I run the computer-few games, correspondence, stock > portfolios, networking via e-mail with friends, relatives and like patients > with similar doses .We go out to eat often, picnics in summer, travel four > times a year to our Florida condo, sometimes abroad run about the neighborhood > within 3 miles in my electric cart. I find time to manage our five single > family home income properties. When home I answer my wife's business phone if > she's not in. And periodically I may run copies and make mailings. This is > less lately as Carol sees the struggle it takes. We have a two acre yard > looking over bank of lake Erie with a view of sunsets people would kill for. > The view is also visible as I sit in adjustable bed. It's on second floor > looking out 8 foot wide glass door facing deck off bedroom, If that view gets > stale I look left from my bed to a woods view through another 8 foot wide > glass door to deck off bedroom also. Please don't envy me. You can see beauty > in any view you have. It's all a matter of attitude and being satisfied with > yourself and satisfied with what you have. I like photographs, music ( used to > have my own band)age 16 to 24. > I like drawing ( was draftsman by trade).Brief background- from high school I > went to drafting, worked my way through college, into engineering, purchasing > agent to highly technical research equipment manufacturers representative > (traveling four states and Canada). I then became a licensed Real Estate > Broker and my wife and I started our own business. I was forced to retire in > 89 and close the office (sold the building I had designed and physically > assisted in building including drywall, woodwork, exterior Swiss Chalet trim, > scuffle climbing, painting, staining, landscaping etc). > I always liked interior or exterior decorating and design right down to color > schemes. > > My sons are chip off the old block and then some. Don 37 has MBA in marketing > and has had interesting positions from paper boy to theater usher, working way > through college, to account executive at radio station to manager of > automobile museum in Naples Florida. The automobiles are valued at millions > of dollars each. Son 35 went the gamma of self employed landscaper > working his way through college getting degree in marketing. Now he's a flight > attendant and an international traveler with Northwest Air. He has been for 12 > years. My wife and I get free air travel because of him. > > An update March 1, 1999: I spend all my waking hours in a three wheel cart. I > too Dave occasionally let out a whale which comes from no where. I think it's > triggered by a yawn and it seems like air gasping to get back into my lungs. I > have had symptom progression ever so slowly and consistently without remission > since 1978. I was misdiagnosed as M/S and then in 1988 properly diagnosed PLS > after a barrage of tests. I now at 61 depend on my wife for transferring, > personal hygiene and all physical movement such as turning from side to back > in bed etc. We still live our life and travel in spite of it. I am used to > being put on an airplane via a straightback . > I publish a support letter called Synapse for PLS friends. This is an > interactive one. Participants have shared progression of their symptoms from > onset of the disease. I've studied and compared one to another and developed a > symptom progression graph. I am willing to share this study with anyone with > PLS or with the desire to research PLS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Geo: What were the questions again? You don't want measurements (female only) along with everything else? If so I pass! LOL! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Geo: I am 67, female, right handed, Italian/Irish/Dutch. Brown hair, brown eye's. Did clerical work most of my life, property/casualty insurance field. I have a second cousin on my Italian side that suppose to have MS, but when I met her (only once) it was like looking in the mirror. I also was in the Air Force 1955-57. My first symptoms were probably in my 30's, leg weakness and tingling of both arms and legs. Finally diagnosed 1986. Anything else? Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Thanks Rita Seems like im going to be wrong on my prediction of Neurological diseases i predicted i would see alot of instance of neurological diseases close to the people on my chart very few people so far have responded with a mother or father with neuro problems most are very remote like you cousins etc. GEO Re: Re: PLS Geo: I am 67, female, right handed, Italian/Irish/Dutch. Brown hair, brown eye's. Did clerical work most of my life, property/casualty insurance field. I have a second cousin on my Italian side that suppose to have MS, but when I met her (only once) it was like looking in the mirror. I also was in the Air Force 1955-57. My first symptoms were probably in my 30's, leg weakness and tingling of both arms and legs. Finally diagnosed 1986. Anything else? Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 OOOOOOOOOOOOOOOOOOOOOOK Here goes age occupation ancestry eye color hair color LH RH Family history of neurological diseases and if you want age of onset GEO Re: Re: PLS Geo: What were the questions again? You don't want measurements (female only) along with everything else? If so I pass! LOL! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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