Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Shoshana, Welcome to the group!! We have kids of many different ages. I have 4 children and my son with Down syndrome is 4 yrs old. I value this list and enjoy hearing from the parents of older kids and adults very much! I am sure that we have a lot to learn from you! Welcome, Kym...mom to 4, including 4 year old with DS ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Shoshana, Welcome to the group!! We have kids of many different ages. I have 4 children and my son with Down syndrome is 4 yrs old. I value this list and enjoy hearing from the parents of older kids and adults very much! I am sure that we have a lot to learn from you! Welcome, Kym...mom to 4, including 4 year old with DS ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Shoshanna Welcome to our group! I think it is wonderful to be able to talk with parents of older people with DS, it is a great help to the rest of us. Welcome! -- Sharon, Mom to (10, DS) and (6) > > Hi ..........I am interested in finding out where members are........I'm > in south Florida...... > > I imagine most of the members here have young children..........My son > is 36 years old. He will be 37 in December...........THANK GOD he is > fine, and a joy to be around.......more on this as we get to know each > other. He is in a group home here in Florida. I have spent almost all > of Tom's years', that's 36, independent of any help..........things are > different now, and happily the world bonds through e-mails etc. > > I welcome your stories, challenges and journeys. I look forward to > helping in any way possible. > > Much Love, > > Shoshana > > > > Click reply to all for messages to go to the list. Just hit reply for messages > to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Shoshanna Welcome to our group! I think it is wonderful to be able to talk with parents of older people with DS, it is a great help to the rest of us. Welcome! -- Sharon, Mom to (10, DS) and (6) > > Hi ..........I am interested in finding out where members are........I'm > in south Florida...... > > I imagine most of the members here have young children..........My son > is 36 years old. He will be 37 in December...........THANK GOD he is > fine, and a joy to be around.......more on this as we get to know each > other. He is in a group home here in Florida. I have spent almost all > of Tom's years', that's 36, independent of any help..........things are > different now, and happily the world bonds through e-mails etc. > > I welcome your stories, challenges and journeys. I look forward to > helping in any way possible. > > Much Love, > > Shoshana > > > > Click reply to all for messages to go to the list. Just hit reply for messages > to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 In a message dated 10/30/2001 2:23:24 PM Central Standard Time, Tubafour@... writes: << and moved every time spelling, grammar, and punctuation were taught. >> ahhh, Elaine, if you had stayed in one school you'd know that really they dont (or didni't this may be changing now with 'the test') tend to spend alot of time on grammar or puctuation. spelling is really only taught in elem. the others, my older kids to have no idea what alot of sentence parts (and two of them graudated with honors) are so it's not something that just effects kids who've moved alot. LOL Hopefully with the 'test' they'll have to teach these things to some extent. probably not tho. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 In a message dated 10/30/2001 2:23:24 PM Central Standard Time, Tubafour@... writes: << and moved every time spelling, grammar, and punctuation were taught. >> ahhh, Elaine, if you had stayed in one school you'd know that really they dont (or didni't this may be changing now with 'the test') tend to spend alot of time on grammar or puctuation. spelling is really only taught in elem. the others, my older kids to have no idea what alot of sentence parts (and two of them graudated with honors) are so it's not something that just effects kids who've moved alot. LOL Hopefully with the 'test' they'll have to teach these things to some extent. probably not tho. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Shoshana, Welcome!!! I have an 18 year old daughter in her Freshman year of college () and a 15 year old son with DS named . has ADD and is having some difficulty with English 101 because we are military and moved every time spelling, grammar, and punctuation were taught. It is pretty tough when you have that problem plus ADD. is having a very good year in school (we are in Georgia, near Savannah). wants to move back to Hawaii though because he had a much better social life there. We haven't had as much time to work on his social life here. He is an extrovert with a capital E. So am I for that matter:))) loves swimming and basketball and will turn into a pizza soon because that's all he wants to eat. Elaine hello from a new member > > Hi ..........I am interested in finding out where members are........I'm > in south Florida...... > > I imagine most of the members here have young children..........My son > is 36 years old. He will be 37 in December...........THANK GOD he is > fine, and a joy to be around.......more on this as we get to know each > other. He is in a group home here in Florida. I have spent almost all > of Tom's years', that's 36, independent of any help..........things are > different now, and happily the world bonds through e-mails etc. > > I welcome your stories, challenges and journeys. I look forward to > helping in any way possible. > > Much Love, > > Shoshana > > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Shoshana, Welcome!!! I have an 18 year old daughter in her Freshman year of college () and a 15 year old son with DS named . has ADD and is having some difficulty with English 101 because we are military and moved every time spelling, grammar, and punctuation were taught. It is pretty tough when you have that problem plus ADD. is having a very good year in school (we are in Georgia, near Savannah). wants to move back to Hawaii though because he had a much better social life there. We haven't had as much time to work on his social life here. He is an extrovert with a capital E. So am I for that matter:))) loves swimming and basketball and will turn into a pizza soon because that's all he wants to eat. Elaine hello from a new member > > Hi ..........I am interested in finding out where members are........I'm > in south Florida...... > > I imagine most of the members here have young children..........My son > is 36 years old. He will be 37 in December...........THANK GOD he is > fine, and a joy to be around.......more on this as we get to know each > other. He is in a group home here in Florida. I have spent almost all > of Tom's years', that's 36, independent of any help..........things are > different now, and happily the world bonds through e-mails etc. > > I welcome your stories, challenges and journeys. I look forward to > helping in any way possible. > > Much Love, > > Shoshana > > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 In a message dated 10/31/01 5:41:39 PM Central Standard Time, Tubafour@... writes: > > subscription to Reader's Digest and take a test on Word Power every week. > I never had spelling in high school either and neither did my kids. I think a lot of reading does more for vocabulary, depending on what you read of course. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 In a message dated 10/31/01 5:41:39 PM Central Standard Time, Tubafour@... writes: > > subscription to Reader's Digest and take a test on Word Power every week. > I never had spelling in high school either and neither did my kids. I think a lot of reading does more for vocabulary, depending on what you read of course. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 I was taught spelling all through high school. We had to get a subscription to Reader's Digest and take a test on Word Power every week. That is part of the reason my vocabulary is fairly large. I hope they do away with that type of teaching that teaches kids to spell incorrectly and then they have to unlearn the wrong way and learn the correct spelling. My nephew had this situation. He's now a junior in high school with straight A's but struggling with English. Elaine Re: hello from a new member > In a message dated 10/30/2001 2:23:24 PM Central Standard Time, > Tubafour@... writes: > > << and moved every time spelling, grammar, and punctuation were > taught. >> > > ahhh, Elaine, if you had stayed in one school you'd know that really they > dont (or didni't this may be changing now with 'the test') tend to spend > alot of time on grammar or puctuation. spelling is really only taught in > elem. the others, my older kids to have no idea what alot of sentence parts > (and two of them graudated with honors) are so it's not something that just > effects kids who've moved alot. LOL > > Hopefully with the 'test' they'll have to teach these things to some extent. > probably not tho. > > Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 I was taught spelling all through high school. We had to get a subscription to Reader's Digest and take a test on Word Power every week. That is part of the reason my vocabulary is fairly large. I hope they do away with that type of teaching that teaches kids to spell incorrectly and then they have to unlearn the wrong way and learn the correct spelling. My nephew had this situation. He's now a junior in high school with straight A's but struggling with English. Elaine Re: hello from a new member > In a message dated 10/30/2001 2:23:24 PM Central Standard Time, > Tubafour@... writes: > > << and moved every time spelling, grammar, and punctuation were > taught. >> > > ahhh, Elaine, if you had stayed in one school you'd know that really they > dont (or didni't this may be changing now with 'the test') tend to spend > alot of time on grammar or puctuation. spelling is really only taught in > elem. the others, my older kids to have no idea what alot of sentence parts > (and two of them graudated with honors) are so it's not something that just > effects kids who've moved alot. LOL > > Hopefully with the 'test' they'll have to teach these things to some extent. > probably not tho. > > Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Shoshana... Welcome to the group! My name is and I'm a mother to 5 children. , my son with DS is a twin and 17 1/2 mos. old. I'm sure I can learn a lot from your experiences. Looking forward to getting to know you better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Shoshana... Welcome to the group! My name is and I'm a mother to 5 children. , my son with DS is a twin and 17 1/2 mos. old. I'm sure I can learn a lot from your experiences. Looking forward to getting to know you better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi, I'm Sissy in SC. I have three children. , 17, senior in high school, Kenny 13, in the eighth grade, and , just turned 12, fifth grade, DS (he and his brother are 22 months apart). --- SHOSHI8@... wrote: > > Hi ..........I am interested in finding out where > members are........I'm > in south Florida...... > > I imagine most of the members here have young > children..........My son > is 36 years old. He will be 37 in > December...........THANK GOD he is > fine, and a joy to be around.......more on this as > we get to know each > other. He is in a group home here in Florida. I > have spent almost all > of Tom's years', that's 36, independent of any > help..........things are > different now, and happily the world bonds through > e-mails etc. > > I welcome your stories, challenges and journeys. I > look forward to > helping in any way possible. > > Much Love, > > Shoshana > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi, I'm Sissy in SC. I have three children. , 17, senior in high school, Kenny 13, in the eighth grade, and , just turned 12, fifth grade, DS (he and his brother are 22 months apart). --- SHOSHI8@... wrote: > > Hi ..........I am interested in finding out where > members are........I'm > in south Florida...... > > I imagine most of the members here have young > children..........My son > is 36 years old. He will be 37 in > December...........THANK GOD he is > fine, and a joy to be around.......more on this as > we get to know each > other. He is in a group home here in Florida. I > have spent almost all > of Tom's years', that's 36, independent of any > help..........things are > different now, and happily the world bonds through > e-mails etc. > > I welcome your stories, challenges and journeys. I > look forward to > helping in any way possible. > > Much Love, > > Shoshana > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Hi, I am in Central Indiana. My dd is 9. Welcome to the list. I always like to hear about our adults. It is gratifying. Hugs Beth _________________________________________________________________ iVillage.com: Solutions for Your Life Check out the most exciting women's community on the Web http://www.ivillage.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Hi, I am in Central Indiana. My dd is 9. Welcome to the list. I always like to hear about our adults. It is gratifying. Hugs Beth _________________________________________________________________ iVillage.com: Solutions for Your Life Check out the most exciting women's community on the Web http://www.ivillage.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Dear Mal, Welcome to the group. Oh yes, how we understand all too well. In fact I can relate so much to you because I was one of the crazy people who carried on with this disorder for 16 years, finding special tricks to help me cope, which I did. What I did not realise was the damage that was being done to my oesophagus in the way of stretching it out of shape. Goodness knows what would have happened if I had let it go on for another 16 years. But the Internet was my saviour, as it was how I got to know what I needed to do. I am 5 months post-op now and feel almost normal. I have to use the word 'almost' as I have to accept that I will never have the peristalsis that normal people do and that although this is a time of peace for me, I will always have the disorder. But its great to be able to go out for a meal and great to simply have a meal at home and get pleasure from it instead of fear and pain. Everyone in this Group has been through the hurt of this disorder, physically, emotionally and socially. We can understand everything you talk about, so talk away and glean support, knowledge and friendship. Best Wishes to you from Ann in England ( a few miles away !!! ) gibson_mal <malgibson@...> wrote: Hello - I am new to this group, having been diagnosed with achalasia 2weeks ago. I am 52, live in Canberra, the beautiful capital city ofAustralia. I have had swallowing difficulties for the last 30 years & learned to cope by drinking heaps of water with food. Every now andthen I'd bring the food up if I didn't drink the water soon enough. Just learned to live with it, assuming it was some sort of gag reflexdisorder. Then it got harder to swallow about a year ago, and Ifinally did something about it - I saw a speech pathologist whoadvised me to hold my breath while I swallow. I could not believe itwhen this made an immediate difference - I didn't need water (andstill usually don't) with food, as long as I concentrate on makingsure I hold my breath at the right time. Does anyone else use thistechnique? If so how much does it help? The speech pathologist alsostrongly recommended I get checked out. So got an endoscope, thenbarium swallow, and hey presto,achalasia - a diagnosis after all theseyears. Now thanks to this group + the internet, I know much moreabout what can be done. Manometry next Wednesday (will drawinspiration from Tia), then a visit to a surgeon (who knows how muchexperience Canberra surgeons have had with Heller myotomies? - willfind out soon enough). Thanks so much for running this group and foreveryone who contributes - it makes such a difference knowing thereare others who understand. Mal Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Mal, Welcome to this wonderful board.. I suggest you to consult Dr.son in Australia ..he has a lot of experience in achalasia surgeries ..I don't know where exactly he is based at..but you can find out by checking in Australia ..he is supposed to the best one in Australia as informed to me by my dr.friend who is also a surgeon .. Hope this information helps you.. Mukesh from Mumbai .. Hello from a new member Hello - I am new to this group, having been diagnosed with achalasia 2 weeks ago. I am 52, live in Canberra, the beautiful capital city of Australia. I have had swallowing difficulties for the last 30 years & learned to cope by drinking heaps of water with food. Every now and then I'd bring the food up if I didn't drink the water soon enough. Just learned to live with it, assuming it was some sort of gag reflex disorder. Then it got harder to swallow about a year ago, and I finally did something about it - I saw a speech pathologist who advised me to hold my breath while I swallow. I could not believe it when this made an immediate difference - I didn't need water (and still usually don't) with food, as long as I concentrate on making sure I hold my breath at the right time. Does anyone else use this technique? If so how much does it help? The speech pathologist also strongly recommended I get checked out. So got an endoscope, then barium swallow, and hey presto,achalasia - a diagnosis after all these years. Now thanks to this group + the internet, I know much more about what can be done. Manometry next Wednesday (will draw inspiration from Tia), then a visit to a surgeon (who knows how much experience Canberra surgeons have had with Heller myotomies? - will find out soon enough). Thanks so much for running this group and for everyone who contributes - it makes such a difference knowing there are others who understand. Mal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 gibson_mal wrote: > ... Manometry next Wednesday (will draw > inspiration from Tia)... People tend to hate that test. Personally I don't think it is a big deal. I have had it twice and the first time they had to remove and replace the catheter twice (very unusual). They will put things up your nose. You know kids do that all the time and you would be surprised at what all they put up their noses. It can make the eyes water and make you want to sneeze not a big deal. A tube will run down inside your throat and it will cause you to want to gag, more than once, and you may even throw up. Again, not a big deal. I believe the trick to this test is to have the attitude that in that situation watery eyes, sneezing, gagging, and throwing up are not bad. It is not painful, but it is uncomfortable. Again, accept that the discomfort is not bad. Let the body feel what it will and let the body complain in what ever way it wants to, but let the mind remain in calm control of itself. Either way, what happens there is good. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Thanks Ann - no doubt there will be many words to come! Mal > Hello - I am new to this group, having been diagnosed with achalasia 2 > weeks ago. I am 52, live in Canberra, the beautiful capital city of > Australia. I have had swallowing difficulties for the last 30 years & > learned to cope by drinking heaps of water with food. Every now and > then I'd bring the food up if I didn't drink the water soon enough. > Just learned to live with it, assuming it was some sort of gag reflex > disorder. Then it got harder to swallow about a year ago, and I > finally did something about it - I saw a speech pathologist who > advised me to hold my breath while I swallow. I could not believe it > when this made an immediate difference - I didn't need water (and > still usually don't) with food, as long as I concentrate on making > sure I hold my breath at the right time. Does anyone else use this > technique? If so how much does it help? The speech pathologist also > strongly recommended I get checked out. So got an endoscope, then > barium swallow, and hey presto,achalasia - a diagnosis after all these > years. Now thanks to this group + the internet, I know much more > about what can be done. Manometry next Wednesday (will draw > inspiration from Tia), then a visit to a surgeon (who knows how much > experience Canberra surgeons have had with Heller myotomies? - will > find out soon enough). Thanks so much for running this group and for > everyone who contributes - it makes such a difference knowing there > are others who understand. > > Mal > > > > > > Send instant messages to your online friends http://uk.messenger. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 thanks for your suggestions Anita and Mukesh - I'll follow them up. Mal > > Mal, > Welcome to this wonderful board.. > I suggest you to consult Dr.son in Australia ..he has a lot of experience in achalasia surgeries ..I don't know where exactly he is based at..but you can find out by checking in Australia ..he is supposed to the best one in Australia as informed to me by my dr.friend who is also a surgeon .. > Hope this information helps you.. > > Mukesh from Mumbai .. > > > Hello from a new member > > Hello - I am new to this group, having been diagnosed with achalasia 2 > weeks ago. I am 52, live in Canberra, the beautiful capital city of > Australia. I have had swallowing difficulties for the last 30 years & > learned to cope by drinking heaps of water with food. Every now and > then I'd bring the food up if I didn't drink the water soon enough. > Just learned to live with it, assuming it was some sort of gag reflex > disorder. Then it got harder to swallow about a year ago, and I > finally did something about it - I saw a speech pathologist who > advised me to hold my breath while I swallow. I could not believe it > when this made an immediate difference - I didn't need water (and > still usually don't) with food, as long as I concentrate on making > sure I hold my breath at the right time. Does anyone else use this > technique? If so how much does it help? The speech pathologist also > strongly recommended I get checked out. So got an endoscope, then > barium swallow, and hey presto,achalasia - a diagnosis after all these > years. Now thanks to this group + the internet, I know much more > about what can be done. Manometry next Wednesday (will draw > inspiration from Tia), then a visit to a surgeon (who knows how much > experience Canberra surgeons have had with Heller myotomies? - will > find out soon enough). Thanks so much for running this group and for > everyone who contributes - it makes such a difference knowing there > are others who understand. > > Mal > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 thanks Notan for your inspirational advice - trying to stay in the present moment is certainly the way to go, although difficult at times! Mal > > ... Manometry next Wednesday (will draw > > inspiration from Tia)... > > > People tend to hate that test. Personally I don't think it is a big > deal. I have had it twice and the first time they had to remove and > replace the catheter twice (very unusual). They will put things up your > nose. You know kids do that all the time and you would be surprised at > what all they put up their noses. It can make the eyes water and make > you want to sneeze not a big deal. A tube will run down inside your > throat and it will cause you to want to gag, more than once, and you may > even throw up. Again, not a big deal. I believe the trick to this test > is to have the attitude that in that situation watery eyes, sneezing, > gagging, and throwing up are not bad. It is not painful, but it is > uncomfortable. Again, accept that the discomfort is not bad. Let the > body feel what it will and let the body complain in what ever way it > wants to, but let the mind remain in calm control of itself. Either way, > what happens there is good. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 I wanted to welcome all the newbie’s to the group. I have been out of commission here a little. Sorry fellow achalasia buddies!!! Been dealing with some odd health issues. More later. But wanted to welcome all the new people and tell Steve that I would be thinking about him!!!! C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of gibson_mal Sent: Sunday, November 12, 2006 5:48 AM achalasia Subject: Hello from a new member Hello - I am new to this group, having been diagnosed with achalasia 2 weeks ago. I am 52, live in Canberra, the beautiful capital city of Australia. I have had swallowing difficulties for the last 30 years & learned to cope by drinking heaps of water with food. Every now and then I'd bring the food up if I didn't drink the water soon enough. Just learned to live with it, assuming it was some sort of gag reflex disorder. Then it got harder to swallow about a year ago, and I finally did something about it - I saw a speech pathologist who advised me to hold my breath while I swallow. I could not believe it when this made an immediate difference - I didn't need water (and still usually don't) with food, as long as I concentrate on making sure I hold my breath at the right time. Does anyone else use this technique? If so how much does it help? The speech pathologist also strongly recommended I get checked out. So got an endoscope, then barium swallow, and hey presto,achalasia - a diagnosis after all these years. Now thanks to this group + the internet, I know much more about what can be done. Manometry next Wednesday (will draw inspiration from Tia), then a visit to a surgeon (who knows how much experience Canberra surgeons have had with Heller myotomies? - will find out soon enough). Thanks so much for running this group and for everyone who contributes - it makes such a difference knowing there are others who understand. Mal Quote Link to comment Share on other sites More sharing options...
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