Guest guest Report post Posted July 26, 2000 I do wear AFO's to help with my walking and to give me extra balance while standing, going other activities, etc. I used to swim on a team but the competition grew, but the coaches gave up on me when they realized I wouldn't be an Olympian. I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I walk and use a stationary bike. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 26, 2000 I do wear AFO's to help with my walking and to give me extra balance while standing, going other activities, etc. I used to swim on a team but the competition grew, but the coaches gave up on me when they realized I wouldn't be an Olympian. I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I walk and use a stationary bike. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 26, 2000 << I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I walk and use a stationary bike. >> Sounds good to me. Back in the dark ages we couldn't enroll in the University of Washington unless we could pass the swimming test, so I learned enough to pass, but somehow I never did learn to swim enough to enjoy it. I admire anyone who can swim well enough to be in competition, even for a while! AFOs sure can make the difference between getting around pretty well and not doing well at all. I hope you're enjoying summer! Kat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 26, 2000 << I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I walk and use a stationary bike. >> Sounds good to me. Back in the dark ages we couldn't enroll in the University of Washington unless we could pass the swimming test, so I learned enough to pass, but somehow I never did learn to swim enough to enjoy it. I admire anyone who can swim well enough to be in competition, even for a while! AFOs sure can make the difference between getting around pretty well and not doing well at all. I hope you're enjoying summer! Kat Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 2, 2001 Marilyn, I'm with you. I want spring to come too. I'm tired of being cold all the time. And you are right. this group is like one big family. I don't know what I would do without you all. Love Ya, Sandy ----- Original Message ----- > Hope you all have a great weekend. Surely spring is in the air even > if that rodent " Phil " says we still have 2 more weeks till spring. > Don't know about the rest of you, but I'm more than ready for nice > weather. Will be nice to put away the winter sweat shirts and pants. > , hope you get good results with your new medication. We were > all getting worried about you. Seems like everyone on this list is > very caring of the others. That's so wonderful. It's like one big > family that I never have had. > Marilyn > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 2, 2001 Marilyn, I'm with you. I want spring to come too. I'm tired of being cold all the time. And you are right. this group is like one big family. I don't know what I would do without you all. Love Ya, Sandy ----- Original Message ----- > Hope you all have a great weekend. Surely spring is in the air even > if that rodent " Phil " says we still have 2 more weeks till spring. > Don't know about the rest of you, but I'm more than ready for nice > weather. Will be nice to put away the winter sweat shirts and pants. > , hope you get good results with your new medication. We were > all getting worried about you. Seems like everyone on this list is > very caring of the others. That's so wonderful. It's like one big > family that I never have had. > Marilyn > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2001 Sandy, I have special ordered Sunshine and Rainbows for you. Let me know when it arrives! Hang in there, this too shall pass. Love, Judy O Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2001 Sandy, I have special ordered Sunshine and Rainbows for you. Let me know when it arrives! Hang in there, this too shall pass. Love, Judy O Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2001 Sandy, I have special ordered Sunshine and Rainbows for you. Let me know when it arrives! Hang in there, this too shall pass. Love, Judy O Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 , What part of Washington? I am in Vancouver. hi > I sure hope this one works....lol > > > I am trying to figure this out, and chat back and forth with you...I wish it > would just go to your home email. too bad. > > Anyway, I am 28, I live in Washington, and I am wanting to have this surgery > done Lap. I was looking into where to have it, and then realized that it is > going to be a lot of travel and expense. > > > > I am going to try your other email..... > > > > ---------------------------------------------------------------------- > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 , What part of Washington? I am in Vancouver. hi > I sure hope this one works....lol > > > I am trying to figure this out, and chat back and forth with you...I wish it > would just go to your home email. too bad. > > Anyway, I am 28, I live in Washington, and I am wanting to have this surgery > done Lap. I was looking into where to have it, and then realized that it is > going to be a lot of travel and expense. > > > > I am going to try your other email..... > > > > ---------------------------------------------------------------------- > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 , What part of Washington? I am in Vancouver. hi > I sure hope this one works....lol > > > I am trying to figure this out, and chat back and forth with you...I wish it > would just go to your home email. too bad. > > Anyway, I am 28, I live in Washington, and I am wanting to have this surgery > done Lap. I was looking into where to have it, and then realized that it is > going to be a lot of travel and expense. > > > > I am going to try your other email..... > > > > ---------------------------------------------------------------------- > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 Not to butt in but we got a hotel for a week in Fairfax for $40 a night through priceline.com. The hotel is a 2 star hotel, so it isn't the Ritz Carlton, but I think it will be ok. They have a recliner in the room that turns into a bed too. (For those of you who prefer to sleep sitting up after the surgery.) My surgery with Dr. E is April 12th. Pre-tested, pre-insured and ready to go! BMI42 w/co-morbids surgery 4/12/01 Dr. Elariny Trigon BC/BS Key Advantage Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 Not to butt in but we got a hotel for a week in Fairfax for $40 a night through priceline.com. The hotel is a 2 star hotel, so it isn't the Ritz Carlton, but I think it will be ok. They have a recliner in the room that turns into a bed too. (For those of you who prefer to sleep sitting up after the surgery.) My surgery with Dr. E is April 12th. Pre-tested, pre-insured and ready to go! BMI42 w/co-morbids surgery 4/12/01 Dr. Elariny Trigon BC/BS Key Advantage Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 7, 2001 Not to butt in but we got a hotel for a week in Fairfax for $40 a night through priceline.com. The hotel is a 2 star hotel, so it isn't the Ritz Carlton, but I think it will be ok. They have a recliner in the room that turns into a bed too. (For those of you who prefer to sleep sitting up after the surgery.) My surgery with Dr. E is April 12th. Pre-tested, pre-insured and ready to go! BMI42 w/co-morbids surgery 4/12/01 Dr. Elariny Trigon BC/BS Key Advantage Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2001 Oh, dear, I suppose I'll have to call my Neurologist regarding the baby aspirin I take daily in conjunction with my stroke medicatioin. Thanks! LOL, Judy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2002 Connie: Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have. I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun. I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of. Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know. Hugs Vera This is my first time here in a chat room on the computer and it will be my first time since I have been diagnosed a year ago to know or talk to anyone with my same disease. I am so very excited on the one hand because I have felt so alone with this disease. On the other hand I feel so scared because it might be way to much reality for me. Anyways I have had symptoms for about seven years they were subtle and I didn't pay much attention to them until two years ago when my left side quit working. Then it took a year to get diagnosed with MSA. My MSA seems to have progressed very fast in the last two years and my doctor is so depressing because he gives me no hope to work with. I've dealt with a lot of losses in the last two years. I've went from a totally healthy 45 year old women to an old 95 year old woman in just two years. Actually some 95 year old women probably get around better than myself. The hardest thing for me is that I have to depend on others for so much. I feel like a burden sometimes to my husband and kids. I am very grateful for all the wonderful friends and the wonderful family I have. I could not handle this horrible cruel mean disease with out there love and support. I hope I'm not being way to dramatic but it does seem cruel at times to me and cruel to my family and friends who have to live with it. greercj Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2002 Connie: Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have. I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun. I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of. Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know. Hugs Vera This is my first time here in a chat room on the computer and it will be my first time since I have been diagnosed a year ago to know or talk to anyone with my same disease. I am so very excited on the one hand because I have felt so alone with this disease. On the other hand I feel so scared because it might be way to much reality for me. Anyways I have had symptoms for about seven years they were subtle and I didn't pay much attention to them until two years ago when my left side quit working. Then it took a year to get diagnosed with MSA. My MSA seems to have progressed very fast in the last two years and my doctor is so depressing because he gives me no hope to work with. I've dealt with a lot of losses in the last two years. I've went from a totally healthy 45 year old women to an old 95 year old woman in just two years. Actually some 95 year old women probably get around better than myself. The hardest thing for me is that I have to depend on others for so much. I feel like a burden sometimes to my husband and kids. I am very grateful for all the wonderful friends and the wonderful family I have. I could not handle this horrible cruel mean disease with out there love and support. I hope I'm not being way to dramatic but it does seem cruel at times to me and cruel to my family and friends who have to live with it. greercj Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2002 Connie: Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have. I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun. I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of. Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know. Hugs Vera This is my first time here in a chat room on the computer and it will be my first time since I have been diagnosed a year ago to know or talk to anyone with my same disease. I am so very excited on the one hand because I have felt so alone with this disease. On the other hand I feel so scared because it might be way to much reality for me. Anyways I have had symptoms for about seven years they were subtle and I didn't pay much attention to them until two years ago when my left side quit working. Then it took a year to get diagnosed with MSA. My MSA seems to have progressed very fast in the last two years and my doctor is so depressing because he gives me no hope to work with. I've dealt with a lot of losses in the last two years. I've went from a totally healthy 45 year old women to an old 95 year old woman in just two years. Actually some 95 year old women probably get around better than myself. The hardest thing for me is that I have to depend on others for so much. I feel like a burden sometimes to my husband and kids. I am very grateful for all the wonderful friends and the wonderful family I have. I could not handle this horrible cruel mean disease with out there love and support. I hope I'm not being way to dramatic but it does seem cruel at times to me and cruel to my family and friends who have to live with it. greercj Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2002 Connie, Hi, welcome to the group. You are not alone. Please do not hesitate to aske questions here, vent fustrations, or just converse. I was diagnosed with MSA two years ago myself and have already fought some of the battles you will fight. Many of the people in this group know the weapons that need to be used in order to get things done. Write if you wish... Dr. Ray -- Hi This is my first time here in a chat room on thecomputer and it will be my first time since I havebeen diagnosed a year ago to know or talk to anyonewith my same disease. I am so very excited on the onehand because I have felt so alone with this disease. On the other hand I feel so scared because it might beway to much reality for me. Anyways I have hadsymptoms for about seven years they were subtle and Ididn't pay much attention to them until two years agowhen my left side quit working. Then it took a year toget diagnosed with MSA. My MSA seems to haveprogressed very fast in the last two years and mydoctor is so depressing because he gives me no hope towork with. I've dealt with a lot of losses in the lasttwo years. I've went from a totally healthy 45 yearold women to an old 95 year old woman in just twoyears. Actually some 95 year old women probably getaround better than myself. The hardest thing for me isthat I have to depend on others for so much. I feellike a burden sometimes to my husband and kids. I amvery grateful for all the wonderful friends and thewonderful family I have. I could not handle thishorrible cruel mean disease with out there love andsupport. I hope I'm not being way to dramatic but itdoes seem cruel at times to me and cruel to my familyand friends who have to live with it. greercj__________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 27, 2002 Jeri, sorry you were in the hospital so long. Glad to have you back. Kimber -- Kimber hominid2@... Southwest Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 27, 2002 Jeri, sorry you were in the hospital so long. Glad to have you back. Kimber -- Kimber hominid2@... Southwest Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 27, 2002 Jeri, sorry you were in the hospital so long. Glad to have you back. Kimber -- Kimber hominid2@... Southwest Representative Pancreatitis Association, International Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Welcome! You'll find plenty of ears and eyes to listen and relate and give as much info and daily " I know what you're going through " friends here on this list. Best to you and your children. Love, Deranda Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Welcome Tana! We are glad to help however we can. Lori in Florida, Mom to 3, 1wcf (Mycah age 5) Hi Hi, my name is Tana and I am here for the very first time. I have two children - Christian - 2 year old wocf and Miriam 14 mths old wcf. Miriam was diagnosed at the age of 3 months. So far she is doing fine except for the fact that is not really much into eating ...... I am looking forward to getting more information on new treatments etc. and also would like to share my daily problems with other CF parents. Greetings from Prague Tana --- Odchozà zpráva neobsahuje viry. Zkontrolováno antivirovým systémem AVG (http://www.grisoft.cz). Verze: 6.0.231 / Virová báze: 112 - datum vydánÃ: 12.2.2001 Quote Share this post Link to post Share on other sites
