Re: [TMIC]
You know, it's funny (odd), but Dave and I were separated at the time I got hit with TM. I was openly dating and in fact, was visiting a friend in Ohio when it happened. I lived in Ohio for a year before I couldn't stand it any more and begged Dave to let me come home. He finally said yes and came to get me and all of our furniture and other things. Over the years I learned how much Dave loved me, although I was certain he did not. I learned how deeply I hurt him. He told me how he sat for hours out in his barn on a tall ladder with a rope around his neck trying to get up the nerve to jump. When I heard this it hurt me to my very core...ho w could I have been so awful, so mean, so cold and uncaring? Through much counseling I learned how much anger was in me for this man. How much his cold demeanor, never talking to me, perfunctory sex life, etc...affected me. How it built up an anger in me that only hurting him back would suffice. I know it was wrong. I love this man more than my life. Years before we began dating I would drive by his house every day and pray to God to allow me to be with Dave. I must have prayed for three or four years before we ran into each other in a laundrymat on a Saturday night. We talked for hours, decided to go out and that was that. We were married a year later. And in spite of everything, we have recently had our 23rd anniversary. Since I am so profoundly affected by TM, and have a foley catheter in all of the time our sex life has been nil. I feel like that's my fault. Maybe he just hates me so much, he can't stand to touch me. He says that's not true, it is that he is afraid he is going to hurt me. We are intimate in other ways, he used to get into bed with me and cuddle, but hasn't done that for years. I don't know why because he states no reason. But he tells me he loves me at at least ten times a day and waits on me hand and foot since I am mainly bed ridden. He treats me like a queen and I do my best to show my appreciation in all manner of ways. So, that's probably more information than you wanted to hear, but it's the truth. It's been 8 years now of living like this and since I am working hard at getting in my chair, we will soon be able to get loaded in the van and go places...something he is looking forward to doing. Now, with Pam's passing it has put a damper on both of our lives and I am having trouble getting out of bed. I need to fight it off and go on with my life. I need help from my Internet friends. I know that my best friend would not want me to live this way...to simply give up on life. I loved Pam like a sister and she loved me in return. Please Pray for me, Jude...please don't hate me for being honest and telling all. In a message dated 6/11/2009 11:39:09 P.M. Eastern Daylight Time, jan...@centurytel.net writes: It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
RE: [TMIC] Managing in winter
You just walk vey carefullyyou where good boots or rubber soles and if needed you use a cane. My legs actually feel better in the winterit is the summer humidity that is the worst! Rob in New Jersey From: jharpe...@aol.com [mailto:jharpe...@aol.com] Sent: Sunday, June 14, 2009 11:40 PM To: tmic-list@eskimo.com Subject: [TMIC] Managing in winter This may seem like an odd question here at the beginning of the summer, but my husband and I were talking about job situations and long-term possibilities and the like, and he made the comment that he never considered moving up North where there was a lot of snow because of my situation. It's true that when we do have snow and ice, which isn't too often here in SC, I pretty much am confined inside. I walk without a cane or walker, but my balance and footing aren't sure enough that I could walk where it is slippery. Though I love him for taking that into account, I hate that he is limited in that way. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/ http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown00 04 for local deals at your fingertips.
Re: [TMIC] Managing in winter
For me the only issues I have with winter is an increase in pain, the heat makes my spasms much worse than cold. I have never lived any where other than snowy Michigan so I think coping with the ice and snow have just become normal. I just wear rubber soled tennis shoes and keep going. As long as there is atleast a thin layer of snow over any ice that may be there walking is not that hard. The only problems happen when places try to remove all the snow from parking lots, side walks etc and then it freezes. I use my cane in winter but that is just for my comfort, dont think it would actually help if I was going to fall. --- On Sun, 6/14/09, jharpe...@aol.com jharpe...@aol.com wrote: From: jharpe...@aol.com jharpe...@aol.com Subject: [TMIC] Managing in winter To: tmic-list@eskimo.com Date: Sunday, June 14, 2009, 11:40 PM This may seem like an odd question here at the beginning of the summer, but my husband and I were talking about job situations and long-term possibilities and the like, and he made the comment that he never considered moving up North where there was a lot of snow because of my situation. It's true that when we do have snow and ice, which isn't too often here in SC, I pretty much am confined inside. I walk without a cane or walker, but my balance and footing aren't sure enough that I could walk where it is slippery. Though I love him for taking that into account, I hate that he is limited in that way. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips.
Re: [TMIC] Relationships
Kevin, I also believe in Karma and also tried to live my life according to the golden rule. Which makes me wonder, if I did something so bad to someone, that I would end up in this situation. If I made any mistakes that warrant this, I would remember. It's hard to say that people reap what they sow when I'm in the condition I'm in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis **An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! (http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Jun eExcfooterNO62)
Re: [TMIC] Transverse Myelitis Network
I was wondering this, too. I got an invite but no information and anything I clicked on just took me back to the same invitation. The TMIC is plenty for me and the forum (_http://www.myelitis.org/forum/_ (http://www.myelitis.org/forum/) ) is there for people who want more. The forum is kind of overwhelming to me. If some want another network, that's fine, but please don't be offended if some of us have enough on our plates and don't join in. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 6/15/2009 9:14:50 A.M. Eastern Daylight Time, rp...@neillsupply.com writes: Jim: Do you have any feedback on the new Transverse Myelitis Network many of us have been invited to join. What is the difference between our present network :the Transverse Myelitis Internet Club and this one…and why was it needed….the only explanation is it can do things our present network cannot! I presently get enough info. On our site and was wondering if this is simply overkill. Thx Rob in New Jersey **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
RE: [TMIC] Depends and Poise
BARBARA: I FOUND AN INTERNET SITE www.hdis.com where you can order on line or by phone 1-800-269-4663. I have found the customer service people are very helpful. You can sign up for automatic delivery and you get a discount, or you can order as you need them. It takes less than a week to get delivery. They carry their own brand which is Serenity Tena, but also carry Poise and Depends. I personally use them for their overnight pad, and I have found that the Wal-Mart house brand (Options by Assurance) is just as good as the brand names and is cheaper. Also, I don't believe they charge for delivery. Give them a call and check them out. You can call and request a catalog. Good luck. TIAD Patti - Wisconsin From: jharpe...@aol.com [mailto:jharpe...@aol.com] Sent: Sunday, June 14, 2009 10:34 PM To: tmic-list@eskimo.com Subject: [TMIC] Depends and Poise My mother-in-law in an assisted living facility nearby uses Depends briefs and Poise pads. They do add up even at the discount store. Does anyone buy them in bulk somewhere or know of a place to get a good price on them? Thanks, Barbara H. http://barbarah.wordpress.com/ http://barbarah.wordpress.com/ _ Download the AOL http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown00 04 Classifieds Toolbar for local deals at your fingertips.
RE: [TMIC]
HEY SWEETIE: DON'T BLAME YOURSELF. IF WE ALL LOOK BACK, WE HAVE ALL DONE THINGS TO HURT OUR SIGNIFICANT OTHERS. THE MAIN THING IS WE REPENT AND TRY TO MAKE AMENDS TO OUR LOVE ONES. YOU KNOW DAVE LOVES YOU OR HE WON'T BE THERE FOR YOU AT THIS TIME. I THINK ALL OUR INTIMATE MOMENTS ARE DIFFERENT AFTER TM. SOME OF IT COMES FROM THE DISEASE AND SOME FOR GETTING OLDER. PAM HAD A WAY OF MAKING US FEEL BETTER AND GIVE US A LIFT UP. I DIDN'T KNOW HER FOR VERY LONG, BUT SURE DO MISS HER LIKE CRAZY. I MISS ALL THE FUNNY JOKES SHE WOULD SEND ME. IF SHE WERE HERE, SHE WOULD FIND THE WORDS TO HELP YOU, BUT SINCE SHE ISN'T WE MUST TRY AND IMAGINE WHAT SHE WOULD SAY AND TALK TO OURSELVES AS THOUGH SHE WERE HERE. I AM SURE SHE IS LOOKING DOWN ON US (PARTICULARLY YOU JUDE) AND IF POSSIBLE HELP US. JUDE, JUST KEEP POSTING SO WE CAN CONNECT AND CHEER UP EACH OTHER. --TIAD PATTI - WISCONSIN From: heyjude48...@aol.com [mailto:heyjude48...@aol.com] Sent: Monday, June 15, 2009 2:24 AM To: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] You know, it's funny (odd), but Dave and I were separated at the time I got hit with TM. I was openly dating and in fact, was visiting a friend in Ohio when it happened. I lived in Ohio for a year before I couldn't stand it any more and begged Dave to let me come home. He finally said yes and came to get me and all of our furniture and other things. Over the years I learned how much Dave loved me, although I was certain he did not. I learned how deeply I hurt him. He told me how he sat for hours out in his barn on a tall ladder with a rope around his neck trying to get up the nerve to jump. When I heard this it hurt me to my very core...how could I have been so awful, so mean, so cold and uncaring? Through much counseling I learned how much anger was in me for this man. How much his cold demeanor, never talking to me, perfunctory sex life, etc...affected me. How it built up an anger in me that only hurting him back would suffice. I know it was wrong. I love this man more than my life. Years before we began dating I would drive by his house every day and pray to God to allow me to be with Dave. I must have prayed for three or four years before we ran into each other in a laundrymat on a Saturday night. We talked for hours, decided to go out and that was that. We were married a year later. And in spite of everything, we have recently had our 23rd anniversary. Since I am so profoundly affected by TM, and have a foley catheter in all of the time our sex life has been nil. I feel like that's my fault. Maybe he just hates me so much, he can't stand to touch me. He says that's not true, it is that he is afraid he is going to hurt me. We are intimate in other ways, he used to get into bed with me and cuddle, but hasn't done that for years. I don't know why because he states no reason. But he tells me he loves me at at least ten times a day and waits on me hand and foot since I am mainly bed ridden. He treats me like a queen and I do my best to show my appreciation in all manner of ways. So, that's probably more information than you wanted to hear, but it's the truth. It's been 8 years now of living like this and since I am working hard at getting in my chair, we will soon be able to get loaded in the van and go places...something he is looking forward to doing. Now, with Pam's passing it has put a damper on both of our lives and I am having trouble getting out of bed. I need to fight it off and go on with my life. I need help from my Internet friends. I know that my best friend would not want me to live this way...to simply give up on life. I loved Pam like a sister and she loved me in return. Please Pray for me, Jude...please don't hate me for being honest and telling all. In a message dated 6/11/2009 11:39:09 P.M. Eastern Daylight Time, jan...@centurytel.net writes: It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? _ Download the AOL http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown00 04 Classifieds Toolbar for local deals at your fingertips.
[TMIC] Janice's questions..
Janice.. My name is Kathy Blaschko and I am 48 as of March 19th. I have been on and off this list since I found it in 2001 (I think). I was 27 (1988) when I first started with the symptoms of TM and was not diagnosed properly till I was 34 (1995). During that time they kept telling me I was in the early stages of MS. It took 4 doctors and a spinal tap/myelogram, and 3 MRI's before I was diagnosed properly. During this time my life was Hell. No one believed I had anything wrong with me except my father and a teacher when I was first having symptoms. Even though I walked funny (as they put it) it was said to be all in my head. During those 7 years I became a Good Actress as it was the only way to survive the criticisms I was getting from some family and friends. The worst one was that I was a drunk (I wobbled when I walked and people thought I was drunk). Some of my family were especially cruel by saying I was faking this to get attention. Even after I was diagnosed no one believed me as there was little known about it and as far as the doctor told me not many cases of it around Thunder Bay where I lived. Also at that time I was new to the internet and had not really thought to check there for information. It was not until it was on 48 Hours (which my husband taped for his family) that people finally started to believe that TM existed. I met my husband in 1996 online in a card playing site. And before we married in 1999 he became an expert on TM and knew my limitations before we married. He also knew that since I had another bout or breakdown (as I call them) where more lesions developed; I had a reoccurring type of TM. He still married me and as I said earlier we have a great marriage. I don't have the MS gait as they call it but I do wobble when I walk most of the time. I have been able to compensate for it so most people just think I stumbled over something or tripped on my own two feet as they call it. I also hide it allot. What I mean by that is when I am in rough shape I hide in the house and only allow my husband and a few friends to see me. I have put up with way to much crap over this to allow others to criticize me anymore. Since Nov. 1st. of 2007 I have been on Lyrica which I find fantastic for my pain and symptoms. Before that I was on so many pills I felt like a walking drug store. My daughter had me convinced I was addicted to Percocet since every so often I was taking 3 a day when the pain was very bad. I talked to my family doctor about this and he called me crazy for allowing her to manipulate me that way. I am still good at playing the actress these days but that is when I am with a new group of people or in a party setting. Just recently I was at a Navy League reunion and met a doctor from Finland (originally from Thunder Bay) and we had a nice discussion about TM as she works with autoimmune patients. It was nice for once with not having to explain exactly what TM is. Well enough about me. My fingers are starting to stutter and my spell/grammar check is flashing all over the place.. LOL Kathy
[TMIC] RE: tmic-digest Digest V2009 #532
Hi all, The Transverse Myelitis Network has nothing to do with the TMA or TMA Forums. It was started by anotehr member here who wanted a site where we could exchange comments/photos/messages/info in a more face-to-face way and there is also a Chat where you can talk to others members who are inline at the time. No one is asking for you to become a member if you don't want to, it is simply there as another resource. http://transversemyelitis.ning.com/ Marieke --Forwarded Message Attachment-- Date: Mon, 15 Jun 2009 09:27:43 -0400 From: jharpe...@aol.com To: rp...@neillsupply.com; jlu...@makoa.org; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network I was wondering this, too. I got an invite but no information and anything I clicked on just took me back to the same invitation. The TMIC is plenty for me and the forum (http://www.myelitis.org/forum/) is there for people who want more. The forum is kind of overwhelming to me. If some want another network, that's fine, but please don't be offended if some of us have enough on our plates and don't join in. Barbara H. http://barbarah.wordpress.com/ In a message dated 6/15/2009 9:14:50 A.M. Eastern Daylight Time, rp...@neillsupply.com writes: Jim: Do you have any feedback on the new Transverse Myelitis Network many of us have been invited to join. What is the difference between our present network :the Transverse Myelitis Internet Club and this one…and why was it needed….the only explanation is it can do things our present network cannot! I presently get enough info. On our site and was wondering if this is simply overkill. Thx Rob in New Jersey Download the AOL Classifieds Toolbar for local deals at your fingertips. --Forwarded Message Attachment-- Date: Mon, 15 Jun 2009 09:49:52 -0500 From: patticoo...@wi.rr.com To: jharpe...@aol.com; tmic-list@eskimo.com Subject: RE: [TMIC] Depends and Poise BARBARA: I FOUND AN INTERNET SITE www.hdis.com where you can order on line or by phone 1-800-269-4663. I have found the customer service people are very helpful. You can sign up for automatic delivery and you get a discount, or you can order as you need them. It takes less than a week to get delivery. They carry their own brand which is Serenity Tena, but also carry Poise and Depends. I personally use them for their overnight pad, and I have found that the Wal-Mart house brand (Options by Assurance) is just as good as the brand names and is cheaper. Also, I don’t believe they charge for delivery. Give them a call and check them out. You can call and request a catalog. Good luck. TIAD Patti - Wisconsin From: jharpe...@aol.com [mailto:jharpe...@aol.com] Sent: Sunday, June 14, 2009 10:34 PM To: tmic-list@eskimo.com Subject: [TMIC] Depends and Poise My mother-in-law in an assisted living facility nearby uses Depends briefs and Poise pads. They do add up even at the discount store. Does anyone buy them in bulk somewhere or know of a place to get a good price on them? Thanks, Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips. --Forwarded Message Attachment-- Date: Mon, 15 Jun 2009 10:06:54 -0500 From: patticoo...@wi.rr.com To: heyjude48...@aol.com; jan...@centurytel.net; tmic-list@eskimo.com Subject: RE: [TMIC] AOL Email HEY SWEETIE: DON’T BLAME YOURSELF. IF WE ALL LOOK BACK, WE HAVE ALL DONE THINGS TO HURT OUR SIGNIFICANT OTHERS. THE MAIN THING IS WE REPENT AND TRY TO MAKE AMENDS TO OUR LOVE ONES. YOU KNOW DAVE LOVES YOU OR HE WON’T BE THERE FOR YOU AT THIS TIME. I THINK ALL OUR INTIMATE MOMENTS ARE DIFFERENT AFTER TM. SOME OF IT COMES FROM THE DISEASE AND SOME FOR GETTING OLDER. PAM HAD A WAY OF MAKING US FEEL BETTER AND GIVE US A LIFT UP. I DIDN’T KNOW HER FOR VERY LONG, BUT SURE DO MISS HER LIKE CRAZY. I MISS ALL THE FUNNY JOKES SHE WOULD SEND ME. IF SHE WERE HERE, SHE WOULD FIND THE WORDS TO HELP YOU, BUT SINCE SHE ISN’T WE MUST TRY AND IMAGINE WHAT SHE WOULD SAY AND TALK TO OURSELVES AS THOUGH SHE WERE HERE. I AM SURE SHE IS LOOKING DOWN ON US (PARTICULARLY YOU JUDE) AND IF POSSIBLE HELP US. JUDE, JUST KEEP POSTING SO WE CAN CONNECT AND CHEER UP EACH OTHER. --TIAD PATTI - WISCONSIN From: heyjude48...@aol.com [mailto:heyjude48...@aol.com] Sent: Monday, June 15, 2009 2:24 AM To: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] You know, it's funny (odd), but Dave and I were separated at the time I got hit with TM. I was openly dating and in fact, was visiting a friend in Ohio when it happened. I lived in Ohio for a year before I couldn't stand it any more and begged Dave to let me come home. He finally said yes and came to get me and all of our
Re: [TMIC] Transverse Myelitis Network
*The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. * *Respectfully, * *Grace*
Re: [TMIC] Transverse Myelitis Network
I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support. We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a face. Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list. We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening. I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it! Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too! Take care, Debbie Capen Secretary The Transverse Myelitis Association - Original Message - From: Grace M. To: jharpe...@aol.com Cc: rp...@neillsupply.com ; jlu...@makoa.org ; tmic-list@eskimo.com Sent: Monday, June 15, 2009 9:00 AM Subject: Re: [TMIC] Transverse Myelitis Network The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. Respectfully, Grace
Re: [TMIC] Transverse Myelitis Network
I agree, Debbie, the more support groups that help more people, the more the word gets out, the better. No quibbling here at all. I just didn't want the people who start new support groups to get offended if they invite people from the TMIC and we decline. It's nothing personal, it's just that, for me, between TMIC, blogging, and Facebook I have more than I can keep up with already. But for those who want/need another support group, more power to ya. :-) Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 6/15/2009 12:23:38 P.M. Eastern Daylight Time, dca...@earthlink.net writes: I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support. We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a face. Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list. We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening. I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it! Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too! Take care, Debbie Capen Secretary The Transverse Myelitis Association - Original Message - From: _Grace M._ (mailto:grace...@gmail.com) To: _jharpe...@aol.com_ (mailto:jharpe...@aol.com) Cc: _rp...@neillsupply.com_ (mailto:rp...@neillsupply.com) ; _jlu...@makoa.org_ (mailto:jlu...@makoa.org) ; _tmic-l...@eskimo.com_ (mailto:tmic-list@eskimo.com) Sent: Monday, June 15, 2009 9:00 AM Subject: Re: [TMIC] Transverse Myelitis Network The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. Respectfully, Grace **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
Re: [TMIC] Transverse Myelitis Network
Well, it was answered before I was even out of bed. :-) The only thing I have to add is that if anyone has an awareness group let me know and I can add it to the page at http://www.myelitis.org/support.htm At 09:22 AM 6/15/2009, Deborah Nord Capen wrote: I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support. We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a face. Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list. We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening. I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it! Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too! Take care, Debbie Capen Secretary The Transverse Myelitis Association - Original Message - From: Grace M. To: jharpe...@aol.com Cc: rp...@neillsupply.com ; jlu...@makoa.org ; tmic-list@eskimo.com Sent: Monday, June 15, 2009 9:00 AM Subject: Re: [TMIC] Transverse Myelitis Network The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. Respectfully, Grace Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Relationships
I believe karma is strictly an interpersonal thing and that there are many factors in the world which are driven by the nature of our universe. Good and bad things happen with out regard to who it affects. Karma had nothing to do with the plague, the 2004 tsunami, the 1918 flu pandemic, there is a chaos to our world and we are subject to it. Especially when it comes to illnesses! I believe we all are survivors of a random event of viral chaos. In fact everyone (and for that matter every living thing) on earth who lives long enough will experience some form of debilitation. Karma, the golden rule, turning the other cheek--- they're just philosophies we can chose to aid us in our learning to cope and they are great ideas that can enrich our lives significantly. I hate the phrase things happen for a reason Some things do but I think many more things do not and I believe Not one of us brought this upon ourselves because we were bad! Our creator loves us just as much as those who are whole in body. remember: Blessed are the poor in spirit for theirs is the kingdom of heaven The key is that we have an opportunity to give reason to what has happened to us. Or, we can be crushed by our circumstances. This choice is our free will in action. Looking for blame in ourselves or others allows us to pass the buck and not move forward. I had a period of suicidal thinking right after High school and when I told a friend, rather than expressing concern or sympathy she launched in and verbally whooped my ASS for having so many blessings and thinking my life was something I could just throw away. Angels come in many forms and I thank God for that memory. Mindy the Artist Down to the half dose level in my Cymbalta weaning and doing great! On Jun 15, 2009, at 9:26 AM, ladyno...@aol.com wrote: Kevin, I also believe in Karma and also tried to live my life according to the golden rule. Which makes me wonder, if I did something so bad to someone, that I would end up in this situation. If I made any mistakes that warrant this, I would remember. It's hard to say that people reap what they sow when I'm in the condition I'm in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!
Re: [TMIC] Transverse Myelitis Network
VERY well said, Debbie! **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
[TMIC] read receipts?
I have a question for you all and I would really appreciate an answer. I would like to know why people send an email into the list with a Read Receipt attached. For some reason I cannot explain, this really bothers me and makes me feel Violated. I would really like to know what they do with this receipt or why they need it. To me sending the receipt makes me feel as if I am being monitored for how much I read the emails on the list. I thought this list was supposed to be there to be another support and we can read and write as we please to the list. I am not trying to center one person out here as I get it from quite a few on the list. Are the people asking for the read receipt monitors of this list or not? I don't mean to offend anyone just checking. Kathy (whom has now checked off Never send a read receipt in tools, options, and receipts )
Re: [TMIC] read receipts?
I've never noticed that, Kathy. Maybe it's just one of those automatic things from some e-mail servers? I think if anything it's just a way of making sure you got and saw it and that it didn't get lost in cyberspace. Does it appear along the bottom of e-mails? That's where ads usually are from the e-mail provider, and I don't usually pay attention to that area, but I'll have to keep an eye out to see if it's there. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 6/15/2009 1:11:29 P.M. Eastern Daylight Time, k...@frontiernet.net writes: I have a question for you all and I would really appreciate an answer. I would like to know why people send an email into the list with a “Read Receipt” attached. For some reason I cannot explain, this really bothers me and makes me feel Violated. I would really like to know what they do with this receipt or why they need it. To me sending the receipt makes me feel as if I am being monitored for how much I read the emails on the list. I thought this list was supposed to be there to be another support and we can read and write as we please to the list. I am not trying to center one person out here as I get it from quite a few on the list. Are the people asking for the read receipt monitors of this list or not? I don’t mean to offend anyone just checking. Kathy (whom has now checked off “Never send a read receipt” in tools, options, and receipts ) **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
Re: [TMIC] read receipts?
*It's just a feature of mail programs that notifies the sender that their mail has been received and opened. I only use it for business correspondence. * *Grace* * *
Re: [TMIC] Transverse Myelitis Network
I am also a member of the paraplegic/quadriplegic website that Jim has started. Although I have TM, which left me a quadriplegic, I identify more with the members of the paraplegic quadriplegic site then with the members of the TM site. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis **An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! (http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Jun eExcfooterNO62)
Re: [TMIC] read receipts?
I have never noticed it, where is it located? Ella **An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! (http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Jun eExcfooterNO62)
Re: [TMIC]
I would be more like you in temperatures but were I live there isn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm.. and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite.All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC] Depends and Poise
I get my incontinent pads from a company called Shield Healthcare..and they deliver my diapers right to my door...I have have Medi-cal here in California pays for it...ask your doctor to call in the prescription..and that's it. Debi From: jharpe...@aol.com Date: 6/14/2009 8:34:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Depends and Poise My mother-in-law in an assisted living facility nearby uses Depends briefs and Poise pads. They do add up even at the discount store. Does anyone buy them in bulk somewhere or know of a place to get a good price on them? Thanks, Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips. Spiral_notebook.jpg
Re: [TMIC] Managing in winter
I have these rubber kleets that pull onto your snow boots they have metal spikes on the bottom..they are very good and well made...I haven't even got close to slipping with them. Also my wheel chair is all terrain I am really impressed with it..I can go threw dirt grass and snow...deep sand doesn't work well in any chair I guess, but I was able to use my chair like a walker and I got down to the water...Oh I live in Lake Tahoe California..and we get a lot of snow too...I generally feel better in winter..as long as I don't get cold..and if I get bone chilling cold it could take days to warm up again..very painful. Debi From: jharpe...@aol.com Date: 6/14/2009 8:40:41 PM To: tmic-list@eskimo.com Subject: [TMIC] Managing in winter This may seem like an odd question here at the beginning of the summer, but my husband and I were talking about job situations and long-term possibilities and the like, and he made the comment that he never considered moving up North where there was a lot of snow because of my situation. It's true that when we do have snow and ice, which isn't too often here in SC, I pretty much am confined inside. I walk without a cane or walker, but my balance and footing aren't sure enough that I could walk where it is slippery. Though I love him for taking that into account, I hate that he is limited in that way. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips. Spiral_notebook.jpg
Re: [TMIC] Managing in winter
It was easier when i was rehabbing in the city... someone shoveled the front of the building and the LiftLine, the paratransit pulled up near the entrance. Now home in the small town, I paid tons to get my walkways shoveled, but often the area i need to land and go down-- my ramps and extra bits weren't done. I used to do all my shoveling, steps , pathways, and driveway, into the street., when i could walk Last winter, my first one home, i just hibernated and prayed for endurance. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/http://barbarah.wordpress.com/ --
[TMIC] Accessibility
When i was in Rochester, I live in a HUD-assisted building and wrote, called and complained that the front doors were not button doors, were heavy, required a key and a push. Think HUD would adhere to the ADA? The courtyard facing doors had a push bar, which would have made life easier but also had a 2 drop so i always had to use the front. They told me they would send an engineer. Now this 23 story building was restricted to elderly or disabled, so it was not my issue alone, but only one other person open shared my ire, and he moved away to Albany, and now I am back home. I got some great advice from Gunny ( thank you!) about my non ADA standard meeting too steep ramp situation wherein the ramp maker refused to sell another bit of ramp to a contractor hired by the state. I wrote the Better Business Bureau and here's the punchline. The owner (hand) wrote second, she doesn't understand ADA standards are for commercial use not residential, you and her may want to educate yourselves for future complaints. ARGHHH! Akua It seems like these people are allowed to decide what accessible means without any kind of guidance. Or else someone is being paid to look the other way. When I was still working, the handicapped parking spots were sometimes the farthest parking spots from the building, and the last to receive snow removal. I took a bad fall getting out of my car once as a result. The building I live in has one wheelchair ramp. It is located at a non-automatic door, there is no button that opens the door. It has a bar in the door that you push to open the heavy door. If there was a fire, and the door was closed, I'd be out of luck. There is no ramp at the main entrance to the building, and I guess the ADA doesn't require a ramp. Makes no sense to me. Kevin --
Re: [TMIC] Accessibility Relationships
Add to the list of complaints: Have you noticed that at many hotels, the ADA rooms are furthest from the elevators? And yes, you are lucky if they have ADA rooms on the first floor. Also, the rooms often face the parking lot and seldom the garden, pool or view? Is this discrimination? I feel it is. At some commercial stores or restaurants we have had to get Terry through the kitchen or the back door to get to the bathroom. In one instance, we had to go two buildings down! In passing, I mentioned this to a Civil Rights attorney I know and he said, lawsuit. We haven't pursued that, of course. This friend has filed many suits against large hotel chains, music festivals, etc., as they are hardly ADA compliant. He himself is disabled and knows first hand the discrimination. I am not saying whatsoever that every place discriminates, not by a long shot. But many business owners are not very aware of the disadvantages that people in wheelchairs are faced with. That's my tangent for the day. As a wife of a TM'er, if I have time tomorrow, I will try to address the relationship issue. **Download the AOL Classifieds Toolbar for local deals at your fingertips. (http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)
Re: [TMIC]
OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause -- Original message from "bradebi" brad...@gmail.com: -- I would be more like you in temperatures but were I live thereisn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm...and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite. All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from "bradebi" brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot... Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good. 2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for everyone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC] Transverse Myelitis Network
AMEN! -- Original message from Jim Lubin jlu...@eskimo.com: -- Well, it was answered before I was even out of bed. :-)The only thing I have to add is that if anyone has an awareness group let me know and I can add it to the page at http://www.myelitis.org/support.htmAt 09:22 AM 6/15/2009, Deborah Nord Capen wrote: I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support.We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a "face". Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list. We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening.I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it!Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too!Take care,Debbie CapenSecretaryThe Transverse Myelitis Association - Original Message - From: Grace M. To: jharpe...@aol.com Cc: rp...@neillsupply.com ; jlu...@makoa.org ; tmic-list@eskimo.com Sent: Monday, June 15, 2009 9:00 AM Subject: Re: [TMIC] Transverse Myelitis Network The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. Respectfully, Grace Jim Lubin jlu...@eskimo.comhttp://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Managing in winter
I wish my wheelchair would go over grass, so i could go in my yard... what kind of wheelchair do you have? I have these rubber kleets that pull onto your snow boots they have metal spikes on the bottom..they are very good and well made...I haven't even got close to slipping with them. Also my wheel chair is all terrain I am really impressed with it..I can go threw dirt grass and snow...deep sand doesn't work well in any chair I guess, but I was able to use my chair like a walker and I got down to the water...Oh I live in Lake Tahoe California..and we get a lot of snow too...I generally feel better in winter..as long as I don't get cold..and if I get bone chilling cold it could take days to warm up again..very painful. Debi --
