Re: [TMIC] tm and the lungs
My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass jcs...@yahoo.com wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols jan...@centurytel.net To: jeff bernier jeffsmokeea...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
[TMIC] reply
For whatever reason I could not reply to the series of emails from earlier Nonetheless, I would like to express my confusion.I found this site years ago...for me the intention was the hope of finding an arena for helping me understand TM, navigate our new life with a disability, ideas from other TMers, solutions, tricks, even complain when TM and its secondary issues get to be too muchas the years have passed it seems to be less and less about TM and more and more about criticism...this conversation was about a seemingly innocent post about a TV show, love it hate it, express your opinions, but at some point the conversation stopped being about the show and became a forum for criticising and judging members who commented for liking or hating a show. No agreement to disagree but implied judgement about what kind of person would feel that way a lot of negative hostility...I had no intention of justifying why I liked or disliked a TV show that I felt served a purpose for my personal situation...when I joined this site... I am not asking for any feedback as it seems likely to go in the wrong direction...agree to disagree and leave it therelove the show hate the show who really cares...my life is significantly more complicated than an argument about a stupid tv show and I should never feel the need to justify myself or feel the need to respond to criticsim of my opinion regardless of how I feel...not on this site...and if I am wrong than this is not the site for me I can assure you -- Mary Anne
Re: [TMIC] Push Girls
). -- Mary Anne Egan The Stettler Group, Inc. mae...@thestettlergroup.com (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] Is it really so important to know?
Thanks that was not meant to make anyone upset or sad it ws simply intended to provide perspective...she is a great child and this is her normal. We did go to the camp in NC and we are applying for the one in Kentucky this year. She has a good life, she is on a local swim team, she does horse back riding and she has nice friends, it just makes things more complicated for her and I get that it can be sad and quite frankly maddening. I know that the kids like her and accept her and help her without being asked, but little things get in the way, their houses are not accessible or the parents are uncomfortable and don't know how to approach their feelings or concerns so she feels more disabled in settings like that but she is good and full of energy and a happy little girl. Ultimately she would love not to be the only child in our school in a wheelchair but at the same time she is impacting a lot of people's (kids and adults), understanding of what it means to be disabled, she is still just a kid. That is a powerful role for a child, one she handles well for the most part. I will say on another note, one benefit through all of this is that we all have come to know real friends, real caring people and we don't tend to get caught up with less than genuine people because they can not be bothered, for that I am also grateful. On Wed, Jan 18, 2012 at 11:59 AM, Pat Cooley patticoole...@gmail.comwrote: Mary Ann my heart is breaking readdiing yoour daughter's couurageous battle with TM. I wish there was something I could do or say to make it all better, especially since I have 2 granddaughters ages 9 13. I don't know how I would handle iand t if they were affected with TM. The thing I can do is put you in touch with a TM wesite that may help you and your daughter. The TM website is www.myelitis.org has a lot of information. The website give information about summer camp for children with TM. It is free all you have to do it get to the camp located in NC. It is a week of fun and activities for kids, some in wheelchairs and others in walkers, etc. The families are included also at no cost to you. This year it is being held in August. Their website is www.thecenterforcourageouskids.org/camp. If you cannot located it, go the the www.myelitis.org websitie. It will certainly be good for your daughter to interact with all the kids and make friendships that may last a lifetime. Patti in Wisconsin On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols jan...@centurytel.net wrote: You and your child absolutely break my heart.At 60 years of age I have adjusted, mostly, to having TM.I can not imagine my child of 7 months contracting this disease. Your obvious strength and love must be the most important thing you have given her.Have you been able to have her contact, through websites, other children that have TM? Even as an adult it was very important to me to talk to other people with TM.We feel so isolated with a disease this rare.If she could email other kids to have communication with TM’ers, it may help her. Your sentence about what TM did NOT take away from us really hit me hard.What a wonderful outlook, and one many of us do not see. Please stay in contact with us and let us know how your daughter is doing – you too. From: Mary Anne Egan Sent: Tuesday, January 17, 2012 1:22 PM To: Robert Pall Cc: subers...@msn.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I don't normally chime in...I am not an adult living with TM or the residual affects...I am the parent of a child who contracted TM at seven months...as such I too would love to know what caused it. Mostly because if there is a genetic component or condition which attributed to this outcomeit would be in the hopes of preventing it from happening to any of my other children or anyone's children for that matter (adults as well). Ideally for me finding why this happened to her is a separate and less concerning pointI could easily say this is a case of bad luck...but then I would also have to say that bad luck is all around me...my father died three months before my daughter was paralyzed. my daughter proceeded to be in and out of the hospital choking and unable to breathe, not once but twice after onset...as a young child she could not tell us anything...we proceeded to go in and out all of the next couple of years with respirators and vents, etc...over the course of her life (now 9), she goes to a public school and has a normal lifeso for me it is ok...for her not so much...she is dynamic and determined but she is also sad and lonely...she does not have play dates, no one calls, she goes to parties as long as they are accessible (which is not always a consideration, understandably so)...she can not dress herself...she can ot get out of bed by herself...she can not dress the way she wants, she
Re: [TMIC] Is it really so important to know?
numb and tingly in my leg and trunk since October. It was a slow onset. It is almost 14 years! Don't know why my immune system attacked me, but it did. I have had 6 episodes where I felt numb and tingly and the doctor put me back on steroids and it went away. Personally I think stress was a big factor in my attacks. I also have another immune disease-bulbous pempgoid. Now I am starting to ramble. It helps to talk to someone who knows what I am talking about and it did initially involve my brain because I could not think of the right words or write them. That has returned slowly. Jane/Splendora Tx In a message dated 1/15/2012 11:12:28 A.M. Central Standard Time, robthe...@aol.com writes: I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a curebut at my age (64) I pray it does not get worse and that new medications might make me feel better. Ok I am starting to ramble All the best to all! Rob in New Jersey -- Mary Anne Egan, also NJ
Re: [TMIC] Re:OT Fwd: Barbara Walters comments on Jane Fonda OT
frenzied application of a wooden baton. From 1963-65, Col. Larry Carrigan was in the 47FW/DO (F-4E's). He spent 6 years in the ' Hanoi Hilton',,, the first three of which his family only knew he was 'missing in action'. His wife lived on faith that he was still alive. His group, too, got the cleaned-up, fed and clothed routine in preparation for a 'peace delegation' visit. They, however, had time and devised a plan to get word to the world that they were alive and still survived. Each man secreted a tiny piece of paper, with his Social Security Number on it , in the palm of his hand. When paraded before Ms. Fonda and a cameraman, she walked the line, shaking each man's hand and asking little encouraging snippets like: 'Aren't you sorry you bombed babies?' and 'Are you grateful for the humane treatment from your benevolent captors?' Believing this HAD to be an act, they each palmed her their sliver of paper. She took them all without missing a beat.. At the end of the line and once the camera stopped rolling, to the shocked disbelief of the POWs, she turned to the officer in charge and handed him all the little pieces of paper.. Three men died from the subsequent beatings. Colonel Carrigan was almost number four but he survived, which is the only reason we know of her actions that day. I was a civilian economic development advisor in Vietnam , and was captured by the North Vietnamese communists in South Vietnam in 1968, and held prisoner for over 5 years. I spent 27 months in solitary confinement; one year in a cage in Cambodia ; and one year in a 'black box' in Hanoi . My North Vietnamese captors deliberately poisoned and murdered a female missionary, a nurse in a leprosarium in Banme Thuot , South Vietnam , whom I buried in the jungle near the Cambodian border. At one time, I weighed only about 90 lbs. (My normal weight is 170 lbs) We were Jane Fonda's 'war criminals' When Jane Fonda was in Hanoi , I was asked by the camp communist political officer if I would be willing to meet with her.. I said yes, for I wanted to tell her about the real treatment we POWs received... and how different it was from the treatment purported by the North Vietnamese, and parroted by her as 'humane and lenient.' Because of this, I spent three days on a rocky floor on my knees, with my arms outstretched with a large steel weight placed on my hands, and beaten with a bamboo cane. I had the opportunity to meet with Jane Fonda soon after I was released. I asked her if she would be willing to debate me on TV. She never did answer me. These first-hand experiences do not exemplify someone who should be honored as part of '100 Years of Great Women.' Lest we forget' 100 Years of Great Women' should never include a traitor whose hands are covered with the blood of so many patriots. There are few things I have strong visceral reactions to, but Hanoi Jane's participation in blatant treason, is one of them. Please take the time to forward to as many people as you possibly can.. It will eventually end up on her computer and she needs to know that we will never forget. RONALD D. SAMPSON, CMSgt, USAF 716 Maintenance Squadron, Chief of Maintenance DSN: 875-6431 COMM: 883-6343 PLEASE HELP BY SENDING THIS TO EVERYONE IN YOUR ADDRESS BOOK. IF ENOUGH PEOPLE SEE THIS MAYBE HER STATUS WILL CHANGE* -- Susan L. Ebling -- Susan L. Ebling -- Mary Anne Egan The Stettler Group, Inc. mae...@thestettlergroup.com (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] Question?
My daughter gets urinary overflow incontinence when she has a UTI, to date she has not had a bladder infection but if I am not mistaken it depends how long the infections sit there On Mon, Dec 29, 2008 at 12:43 PM, CANDIS KALLEY cakal...@embarqmail.comwrote: Never have had a kidney infection, I'm wondering if I have one now. I've got a HORRIBLE backache on the left side just above my hip bone and it's tender to the touch; I break out sweating for no reason - running 99.8 which is a fever for me; I've lost my bladder control, what little I had - I go to the bathroom, wash my hands or walk just a few steps and the urine just starts flowing. I'm also much more tired than usual. Can anyone give me a clue? Candy K. -- Mary Anne Egan The Stettler Group, Inc. mae...@thestettlergroup.com (908) 806-3001 (908) 806-3113 Fax
Re: Fw: [TMIC] question about post
as a newbie. I thought the OT in subject was occupational therapy!..LOL Mary Anne On Tue, Oct 28, 2008 at 6:13 PM, Gillian Clark [EMAIL PROTECTED]wrote: ** *I don't know what all the fuss is about either Jeanne, we have had for many moons now an agreement that anything that is not TM related is simply prefaced with OT in the subject line. In the early days of life with TM for me, it was mostly the OT topics that saved my sanity. Not the religious or political mails but certainly the silly ones, laughter is always the best medicine, no matter what your problem is. Like Phran3que, I suffer central neuropathic pain and after 7 years of not one second without the unrelenting pain, I still love to laugh.* ** *There is always a lot of information about drugs etc on here and it really takes very little effort to hit the delete button.* ** *Gilly* - Original Message - *From:* jrushton [EMAIL PROTECTED] *To:* Jenna [EMAIL PROTECTED] ; tmic tmic-list@eskimo.com *Sent:* Tuesday, October 28, 2008 10:00 AM *Subject:* Re: [TMIC] question about post I have a simple suggestion after all of the discussion on religion and politics...maybe too simple? What if we were to add 'Rel' or 'Poll' to the Subject line whenever we want to add either and that way it will give the reader a chance to delete it without having to read it first?? I'm fine without it but it might help keep peace for all and I mean that in a good way. Jeanne in Dayton -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
[TMIC] RE: incontinence
To all, HELP, my daughter is now 61/2 and she is incontinent and we are on a bladder program, cathing etc. I think she has officially maxed out the diapers...size six is the biggest I can find...does anyone know where we can go from here? She is having too many accidents in between and I think it is because the diapers are too small...thanks. Mary Anne -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] truth in labeling
As a relatively new member I could not agree more. Mary Anne On Tue, Oct 28, 2008 at 9:58 AM, Robert Pall [EMAIL PROTECTED] wrote: I cannot believe how much discussion this topic has yielded. This is not that difficultsimply do not discuss non TM matters with the group. I have no problem with a member discussing spiritualiy as a form of coping with our condition...simply leave out religion, politics, jokes etc. from the site. These are topics you can share with specific members...but not to the entire list. We should always consider how a new member looking for information will respond to non TM issues. We have had numerous cases of members unsubscribing due to these emails.The so called dirty topics are certainly not dirty...but simply problems related to the condition and do not need to be labeled mature. All we must do is stay on topic and use common sense. Rob in New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, October 28, 2008 9:43 AM To: Sally Wilkinson; tmic-list@eskimo.com Subject: [TMIC] truth in labeling Good Morning from Montreal, I agree with Sally!! We need to develop code which will be put in the subject line: We use OT for off topic. We need to come up with an abbreviation for blessings, and other religious stuff. How about PTL (praise the lord)? GBY (God Bless You)?? And Mature (Adult) matters such as lack of sex, too much sex, trouble recharging batteries, erectile dysfunction- which has it's own (ED)- orgasmic dysfunction, allodynia making physical intimacy impossible...I could go on and on. Let us pick MM (Mature Matures). Then we have Dirty topics dealing with urine, bladders, feces, colon and we should add bed sores- I hate reading about bed sores!!. How about a simple DT (Dirty Topic) I can't think of any more, so please help me Your humble savant, pHranq3ue -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] is this an M.S. problem?
Diane, My daughter gets fevers of unknown origin, as we have been told to call them. For us, over the years we have learned that her level of injury (now c5) affects her thermostat and she cannto regulate her temp. She did not sweat for four to five years and we always had to assist in getting her temp down externally. Geting her shoes and socks off, spraying her with water, getting her under fans, etc...it helps a lot but if she gets too cold too fast that is also an issue so there needs to be a balance or there appears to be too much input. The same is true for the cold, we need to warm her externally before her body catches up. She began sweating in her feet about 6-8 months ago. When she was first diagnosed she was only seven months and she was in the hospital for about 6 weeks and we could not go home with a fever. We used to give her a cold washcloth to cool her off and it became so habitual that she still asks to sleep with one at night, six years later. She especially gets hot at night so she finds it helpful. Most of her fevers we found were being addressed through the use of these external means. But she has had real fevers too where she has needed medicine. IT took us a long time to be able to differentiate. As they both would register as fevers on a thermometer. To this day there are times we start with external means and see how she responds. Hope that helps. Mary Anne [EMAIL PROTECTED] wrote: Hey Randy. I have suspected MS (no definite dx yet). I've had no auditory or visual problems but vertigo/dizziness do come periodically. My sense of smell taste are also affected. I get pins needles in my face sometimes a sensation that someone has stabbed me with a shapened pencil somewhere on the outside of my head. All my brain MRIs have been clear so who knows. Here's something I've never heard discussed on TMIC ... Periodically, I get really high fever. It usually comes with fatigue, emotional upset, etc. The doctors have no answer. I just think it's the nerve damage screwing up my thermostat. Anyone else get fever? Diane in Canada - Original Message - *From:* randy rankin [EMAIL PROTECTED] *To:* TM Group tmic-list@eskimo.com *Sent:* Tuesday, October 14, 2008 9:29 PM *Subject:* [TMIC] is this an M.S. problem? I have had some ear problems for the past few weeks. I went from hearing well to sudden hearing problems, vertigo and blurriness with my vision. When I talk, I hear the sounds of my voice muffled up inside of my head and not like the usually normal hearing. The ear doctor cleaned up my ear and it took 3 trips. My hearing seemed improved but a lot of the wierdness kept going on - and I am hoping that it will just clear up. But the reason that I am writing is because the ear doctor said that a lot of my problems seemed to have a neurological basis. I have had vertigo, dizziness and things just seem wierd. My vision has been off in a very odd way especially when I either try to focus or if I move my head or something moves by me. He brought this up without prior knowledge of my history with TM and the other oddities that I had had and wanted me to have an MRI to check to see if my odd auditory and vision issues were being caused from something in my brain. He asked me specifically if I had ever had problems with tingling, numbness or other M.S. type symptoms and thinks that my neuro should check it out. I'm very skeptical about his ideas yet also a little nervous about doubting his speculations. Those of you who have MS, have you ever heard/experienced odd things like sudden vertigo, dizziness, vision and auditory changes ect.? I'm very nervous about this. I have already gone through two foot drops, loss of my right leg, loss of bladder function and the pain and miserable mobility issues that come with TM, the physical thearpy and finally I am for the first time walking and getting around without spasms or pain. I am not ready for a new bout with a new problem . -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] Questions
I met a woman whose TM was caused by the virus that causes shingles. I met another woman who had shingles and her diagnosis for her resulting paralysis was thought to be TM or Guillane Barre, either way thought to be brought on by shingles also...my daughter's case is thought to be brought on by a virus or a vaccine...no one knows... On Fri, Oct 3, 2008 at 8:03 PM, [EMAIL PROTECTED] wrote: Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: * I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude * -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
