Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Hello Moshe, Nice to meet you but sorry has to be here and not in person. I am Shirley from (Michigan) caregiver of husband who has PLS. Glad you have found us here these people are all the best as you will soon come to find out on your own. They well tell you things that no doctor could even guess about PLS. Thanks for the invite to come and visit may someday take you up on that. Welcome aboard Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Hello Moshe, Welcome to our group!! You sound like a fighter as many of the PLSers are. We try to be optomistic and yet realistic in our common problems. Keeping active, physically and mentally, are good and will help you cope with this rotten disease. Keep up your activities as long as you can. I started with PLS at about age 60 (we're never really sure when it starts) and am still going at 71. You'll have to tell us more about Israel since most of have never been there. Peace and blessings, Vivian in land, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 WECOME MOSHIE.......my husband Dorian,has pls for 7 years. we live in canada. He uses a 4 wheel walker inside ,and wheel chair out side.He is not on any medication he was on baclofen but found he could not function very well on the drug.He tries to do as many exercises as he can. he finds the exersises help keep him stronger. we have found this pls site a wealth of info.The people here are very friendly,we will look forward to futher posting from you .......... laura and dorian . Hello I'm new around > HALO EVERYBODY > > I am Moshe, living in Israel, 60 years old, have PLS since the beginning > of 2000. > I first felt that I was loosing balance outdoors. At june same year I > first met a neuro that started by sending me > to different tests like CT of the brain, MRY , EMG, blood test looking for > viruses, and couldn't find any thing wrong, > At feb 2001 I felt very weak then I decided to buy a home equipment called > orbitrek (a kind of bicycle without a seat > that works with hand and feet) and slowly I achieved to exercise half an > hour every day and I felt much better. > At October 2001 I made a tour to Argentina despite my walking > difficulties I had a fantastic tour for a month all by myself alone > still didn't need any tools assistant. > At may 2002 I was diagnosed by professor Sade as having spastic > paraparesis and a month later a neuro doctor Vivian > Drory (she his the head of a well known " emg " institute of the biggest > hospital in Tel Aviv) diagnosed it as pls. > Immediately when I knew the name of the disease I started searching the > web and I understood that it is no medical treatment but physic therapy, > and sport exercises. > I was taking baclofen since October 2000, about 3 a day of 10 mg and > didn't get easier with the spasticity, dr. Drory increased it to 80 mg a > day, well, the day I took 50 mg (of coarse increasing slowly) I was very > sleepy, my function reduced to less then half of what I was doing I > consulted her again and I reduced again the baclofen. > Meantime I started to go to a sport club to swim and also I go on a walker > , in addition I get physiotherapy that consist many stretching exercises > and also I take Occupational therapy to improve the delicate motorist > function of my hands. > I visited professor Sade last week and he stopped me of taking baclofen > and prescribed me a capsule neurontin 400 mg , that is dedicated from the > beginning for epilepsy and now the research found it good for spasticity > and doesn't cause sleeping effect. I started by taking one a day > for the following 4 days and than I will take 2 for the next 4 days and so > on until I will be taking 6 per day . By than I'll report you the change. > About me, I live alone, I have 2 daughters and a son all living out of > home and still singles, I am absolutely independent, I like to sing and > participate in 2 choirs, I have a social group, with them I travel > (almost) each Saturday to a tour and if the ground is plane I also walk > with my friends to beautiful places. My day begins on the orbitrek 15 > minutes than I climb 6 floors down stairs and 6 floors up stairs, and in > between I make exercises and than back at home I make stretch exercises > and believe me that the benefit his enormous, and also believe me that I > am not the sport type .now is winter over hire and cold affects me badly, > does it to you also? > YYOU ARE ALL INVITED TO COME AND VISITME AND THE BEAUTTIFULL CONTRY HIRE. > I AM VERY GLAD THAT I FOUND PLS FRIENDS AND WISH YOU ALL HEALTH AND > HAPPINESS > > MOSHE > please note it that neurontin is given also for neuro pains > . > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Dear Moshe, Welcome to this fantastic PLS group, and we are glad you found us too. We are becoming quite an international group. You sound like you have a wonderful attitude, and that is so important in maintaining abilities when dealing with PLS. You can be very proud of yourself for staying so active and positive. Staying as active as you can is also very important, but not so active that you exhaust yourself. Are you still working? I am 55, female, also single, and live alone on my four acres, out in the country, in Northern Iowa. I have four children, all grown, some married, and have four grandbabies, and am expecting two more grandbabies this year! I work four shifts per week as a nurse in a small group home for mentally disables young women. It is quite a sedentary job, as I cannot handle standing or walking for long periods of time. I am on no medications, and walk slowly, but without cane or walker most of the time. I do not exercise much, except to walk the length of my driveway each day to pick up my mail, and bike a little on my recumbent bicycle. I also like to sing, and belong to a local choral group. Keep in touch. You are a very interesting person, and if you are ever in Iowa, my door is always open to friends, and the coffee or tea is plentiful! Blessings, Laurel Hello I'm new around > HALO EVERYBODY > > I am Moshe, living in Israel, 60 years old, have PLS since the beginning > of 2000. > I first felt that I was loosing balance outdoors. At june same year I > first met a neuro that started by sending me > to different tests like CT of the brain, MRY , EMG, blood test looking for > viruses, and couldn't find any thing wrong, > At feb 2001 I felt very weak then I decided to buy a home equipment called > orbitrek (a kind of bicycle without a seat > that works with hand and feet) and slowly I achieved to exercise half an > hour every day and I felt much better. > At October 2001 I made a tour to Argentina despite my walking > difficulties I had a fantastic tour for a month all by myself alone > still didn't need any tools assistant. > At may 2002 I was diagnosed by professor Sade as having spastic > paraparesis and a month later a neuro doctor Vivian > Drory (she his the head of a well known " emg " institute of the biggest > hospital in Tel Aviv) diagnosed it as pls. > Immediately when I knew the name of the disease I started searching the > web and I understood that it is no medical treatment but physic therapy, > and sport exercises. > I was taking baclofen since October 2000, about 3 a day of 10 mg and > didn't get easier with the spasticity, dr. Drory increased it to 80 mg a > day, well, the day I took 50 mg (of coarse increasing slowly) I was very > sleepy, my function reduced to less then half of what I was doing I > consulted her again and I reduced again the baclofen. > Meantime I started to go to a sport club to swim and also I go on a walker > , in addition I get physiotherapy that consist many stretching exercises > and also I take Occupational therapy to improve the delicate motorist > function of my hands. > I visited professor Sade last week and he stopped me of taking baclofen > and prescribed me a capsule neurontin 400 mg , that is dedicated from the > beginning for epilepsy and now the research found it good for spasticity > and doesn't cause sleeping effect. I started by taking one a day > for the following 4 days and than I will take 2 for the next 4 days and so > on until I will be taking 6 per day . By than I'll report you the change. > About me, I live alone, I have 2 daughters and a son all living out of > home and still singles, I am absolutely independent, I like to sing and > participate in 2 choirs, I have a social group, with them I travel > (almost) each Saturday to a tour and if the ground is plane I also walk > with my friends to beautiful places. My day begins on the orbitrek 15 > minutes than I climb 6 floors down stairs and 6 floors up stairs, and in > between I make exercises and than back at home I make stretch exercises > and believe me that the benefit his enormous, and also believe me that I > am not the sport type .now is winter over hire and cold affects me badly, > does it to you also? > YYOU ARE ALL INVITED TO COME AND VISITME AND THE BEAUTTIFULL CONTRY HIRE. > I AM VERY GLAD THAT I FOUND PLS FRIENDS AND WISH YOU ALL HEALTH AND > HAPPINESS > > MOSHE > please note it that neurontin is given also for neuro pains > . > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Moshe, Welcome to the Club where no one wants to be a member. I have had PLS since 1987, even though six neurologists in four cities said I had MS. In 1997, at an MS Center in Denver, Colorado, I finally got a diagnosis of PLS. Spasticity and imbalance are my two worse problems. Unfortunately I have been unable to tolerate either Baclofen or Zanaflex and expect to receive my first batch of Neurontin, 400 mg most any day now. You have found a wonderful bunch of people who have, or are caring for someone who has this miserable malady. Please don't hesitate to ask any question that you have. Many have symptoms and problems that others don't have, which makes for some interesting conversations sometimes. Everyone is very friendly and open to personal questions, even though you will find that some of the others have a slightly weird sense of humor, which also generates some interesting conversations. Welcome! Vaughn Hickman in Tennessee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Hi Moshe, Welcome to our list. Have you found our PLS websites: http://www.geocities.com/freyerse/index.html Our PLS Database: http://www.geocities.com/freyerse/guest.html http://www.geocities.com/freyerse/plsdb.html And the PLS Data (different than the PLS Database) http://www.als-pls.org/PLSdata.htm That's probably enough for now, but you might find some interesting stuff at these links. I take Neurontin, 2 x 300 mg, 3 x per day...for a total of 1800 mg per day. I also have a baclofen pump for the spasticity. You can read about me on the last link (PLSdata) Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Moshe, Let me join the others who have extended a warm welcome to you. You have found a wonderful source of information sharing and support in this group. It sounds as if things are going pretty well for you. Your positive attitude is admirable. We all have our " down " times, but for the most part this is a very uplifting, fun-loving group. Lots of serious topics are discussed, but we also share many laughs. Feel free to ask any questions you may have. There are many who have had PLS for a long time and are willing to share the wisdom of their experience with you. Dolores in CT (I am half way between NY and Boston) Hello I'm new around > > HALO EVERYBODY > > > > I am Moshe, living in Israel, 60 years old, have PLS since the beginning > > of 2000. > > I first felt that I was loosing balance outdoors. At june same year I > > first met a neuro that started by sending me > > to different tests like CT of the brain, MRY , EMG, blood test looking for > > viruses, and couldn't find any thing wrong, > > At feb 2001 I felt very weak then I decided to buy a home equipment called > > orbitrek (a kind of bicycle without a seat > > that works with hand and feet) and slowly I achieved to exercise half an > > hour every day and I felt much better. > > At October 2001 I made a tour to Argentina despite my walking > > difficulties I had a fantastic tour for a month all by myself alone > > still didn't need any tools assistant. > > At may 2002 I was diagnosed by professor Sade as having spastic > > paraparesis and a month later a neuro doctor Vivian > > Drory (she his the head of a well known " emg " institute of the biggest > > hospital in Tel Aviv) diagnosed it as pls. > > Immediately when I knew the name of the disease I started searching the > > web and I understood that it is no medical treatment but physic therapy, > > and sport exercises. > > I was taking baclofen since October 2000, about 3 a day of 10 mg and > > didn't get easier with the spasticity, dr. Drory increased it to 80 mg a > > day, well, the day I took 50 mg (of coarse increasing slowly) I was very > > sleepy, my function reduced to less then half of what I was doing I > > consulted her again and I reduced again the baclofen. > > Meantime I started to go to a sport club to swim and also I go on a walker > > , in addition I get physiotherapy that consist many stretching exercises > > and also I take Occupational therapy to improve the delicate motorist > > function of my hands. > > I visited professor Sade last week and he stopped me of taking baclofen > > and prescribed me a capsule neurontin 400 mg , that is dedicated from the > > beginning for epilepsy and now the research found it good for spasticity > > and doesn't cause sleeping effect. I started by taking one a day > > for the following 4 days and than I will take 2 for the next 4 days and so > > on until I will be taking 6 per day . By than I'll report you the change. > > About me, I live alone, I have 2 daughters and a son all living out of > > home and still singles, I am absolutely independent, I like to sing and > > participate in 2 choirs, I have a social group, with them I travel > > (almost) each Saturday to a tour and if the ground is plane I also walk > > with my friends to beautiful places. My day begins on the orbitrek 15 > > minutes than I climb 6 floors down stairs and 6 floors up stairs, and in > > between I make exercises and than back at home I make stretch exercises > > and believe me that the benefit his enormous, and also believe me that I > > am not the sport type .now is winter over hire and cold affects me badly, > > does it to you also? > > YYOU ARE ALL INVITED TO COME AND VISITME AND THE BEAUTTIFULL CONTRY HIRE. > > I AM VERY GLAD THAT I FOUND PLS FRIENDS AND WISH YOU ALL HEALTH AND > > HAPPINESS > > > > MOSHE > > please note it that neurontin is given also for neuro pains > > . > > > > > > --- > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > > > --- > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 Hello Moshe: Glad you found us, I'm sure you'll likely find more helpful info here than most doctors are able to offer. It's great to hear how active you are, you re Orbitrek sounds very interesting. I'm sure we must have something similar here although I've never heard of it, you've got me curious to find out. I'm interested to hear how the neurontin works for you. You mentioned the cold affecting you alot, I think it does most with PLS, for me it makes my spasticity increase immediately. You can ask any question here and be sure to get someone who likely has an answer. Again welcome and take care for now. Jen L. Ottawa, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 ---Hi, all the new people, welcome to a great sight that will help you cope with this rotten disease. I found it about 3 years ago and has helped me alot as I of course new no one else that had PLS. I live in Washington state. I have a wonderful husband of 28 years and a wonderful dog named Pepper. She is not feeling very well as she had surgery last Friday for a small mass in her bottom. She is twelve years old and I feel sorry for her. I started noticing my balance was bad about 18 years ago and also weakness in my left leg. Finally after 15 years and numerous Dr's I was diagnosed by one here in my town. It was more a relief than a shock because I knew their was something wrong but no one knew what? I use a cane around the house and when I go out by myself a 4 wheeled walker which I love. That is enough about me. Keep asking away, because one of us surely will have an answer. CarolynIn PLS-FRIENDS , " Dolores Carron " <d.carron@w...> wrote: > Moshe, > Let me join the others who have extended a warm welcome to you. You have > found a wonderful source of information sharing and support in this group. > It sounds as if things are going pretty well for you. Your positive > attitude is admirable. We all have our " down " times, but for the most part > this is a very uplifting, fun-loving group. Lots of serious topics are > discussed, but we also share many laughs. Feel free to ask any questions > you may have. There are many who have had PLS for a long time and are > willing to share the wisdom of their experience with you. > Dolores in CT (I am half way between NY and Boston) > Hello I'm new around > > > > > HALO EVERYBODY > > > > > > I am Moshe, living in Israel, 60 years old, have PLS since the > beginning > > > of 2000. > > > I first felt that I was loosing balance outdoors. At june same year I > > > first met a neuro that started by sending me > > > to different tests like CT of the brain, MRY , EMG, blood test looking > for > > > viruses, and couldn't find any thing wrong, > > > At feb 2001 I felt very weak then I decided to buy a home equipment > called > > > orbitrek (a kind of bicycle without a seat > > > that works with hand and feet) and slowly I achieved to exercise half an > > > hour every day and I felt much better. > > > At October 2001 I made a tour to Argentina despite my walking > > > difficulties I had a fantastic tour for a month all by myself alone > > > still didn't need any tools assistant. > > > At may 2002 I was diagnosed by professor Sade as having spastic > > > paraparesis and a month later a neuro doctor Vivian > > > Drory (she his the head of a well known " emg " institute of the biggest > > > hospital in Tel Aviv) diagnosed it as pls. > > > Immediately when I knew the name of the disease I started searching the > > > web and I understood that it is no medical treatment but physic therapy, > > > and sport exercises. > > > I was taking baclofen since October 2000, about 3 a day of 10 mg and > > > didn't get easier with the spasticity, dr. Drory increased it to 80 mg a > > > day, well, the day I took 50 mg (of coarse increasing slowly) I was very > > > sleepy, my function reduced to less then half of what I was doing I > > > consulted her again and I reduced again the baclofen. > > > Meantime I started to go to a sport club to swim and also I go on a > walker > > > , in addition I get physiotherapy that consist many stretching exercises > > > and also I take Occupational therapy to improve the delicate motorist > > > function of my hands. > > > I visited professor Sade last week and he stopped me of taking baclofen > > > and prescribed me a capsule neurontin 400 mg , that is dedicated from > the > > > beginning for epilepsy and now the research found it good for spasticity > > > and doesn't cause sleeping effect. I started by taking one a > day > > > for the following 4 days and than I will take 2 for the next 4 days and > so > > > on until I will be taking 6 per day . By than I'll report you the > change. > > > About me, I live alone, I have 2 daughters and a son all living out of > > > home and still singles, I am absolutely independent, I like to sing and > > > participate in 2 choirs, I have a social group, with them I travel > > > (almost) each Saturday to a tour and if the ground is plane I also walk > > > with my friends to beautiful places. My day begins on the orbitrek 15 > > > minutes than I climb 6 floors down stairs and 6 floors up stairs, and in > > > between I make exercises and than back at home I make stretch exercises > > > and believe me that the benefit his enormous, and also believe me that I > > > am not the sport type .now is winter over hire and cold affects me > badly, > > > does it to you also? > > > YYOU ARE ALL INVITED TO COME AND VISITME AND THE BEAUTTIFULL CONTRY > HIRE. > > > I AM VERY GLAD THAT I FOUND PLS FRIENDS AND WISH YOU ALL HEALTH AND > > > HAPPINESS > > > > > > MOSHE > > > please note it that neurontin is given also for neuro pains > > > . > > > > > > > > > --- > > > Outgoing mail is certified Virus Free. > > > Checked by AVG anti-virus system (http://www.grisoft.com). > > > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > > > > > > --- > > > Outgoing mail is certified Virus Free. > > > Checked by AVG anti-virus system (http://www.grisoft.com). > > > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > > > > > --- > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > > Version: 6.0.449 / Virus Database: 251 - Release Date: 27/01/03 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 YES, WELCOME MOSHED. WE LIVE IN OHIO. DON WAS DIAGNOSED WITH PLS FIRST BUT HAS BEEN CHANGED TO ALS. BUT WE KEEP HANGING AROUND THE KIND PEOPLE. SORRY TO HEAR OF YOUR PROBLEM BUT THESE FOLKS WILL BRIGHTEN YOUR WORLD. AND BOY DOE THE WORLD NEED TO BE BRIGHTENED. BONNIE Quote Link to comment Share on other sites More sharing options...
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