Re: [TMIC] Transverse Myelitis Story
I would like to write my story, but in some kind of relapse. My feet hurt so bad and they never have before. Has anyone gone to a pain specialist? Thanks Susan in Phoenix, AZ On Apr 28, 2013, at 2:39 AM, Janet Dunn j.d...@shaw.ca wrote: I woke up one morning in late August 2004 and my right leg was tingling and numb, like I had a muscle knot. I went to the chiropractor, the massage therapist, and the rolfer - and none of them could change the feeling. The numbness increased, as did the banding (now I know what that is!) and the pain in my legs. In mid-September I went to my doctor and mentioned it to him - he said I was overreacting when I mentioned the possibility of MS. Ok, whatever. In October I realized that I had no feeling on the right side of my body - so the doc finally sent me for an MRI. The results came back that I had MS. Huge panic for the doc - put me in the hospital and gave me prednisone. That didn't help. I was sent to the MS clinic in Vancouver (800 miles away) - they told me to go home and rest. Symptoms continued to worsen, and finally in 2006 I had a spinal tap - and the diagnosis of TM. Here I am almost nine years later - managing the pain, and the numbness and the burning, and the . . . and the . . . - I know that you can fill in the blanks. I am working full time - at great expense to my body and my fatigue - but I have no choice as I am a walking wounded. On bad days I use a cane, on worse days I stay in bed, and on good days I am so grateful. The lesion is at T4-5 Of course the diagnosis is idiopathic TM - but interestingly enough about a month earlier I fell out of the back of a pickup truck (after using an outhouse in the back of the truck while partying with the seniors - be careful when partying with seniors!) and broke my wrist. To this day I believe the blunt force trauma of hitting the ground that hard - the stairs collapsed - contributed or caused the TM. I have had no further attacks, but I do have some excruciating days. Janet BC Canada j_dunn.vcf
[TMIC] Transverse Myelitis Story
I woke up one morning in late August 2004 and my right leg was tingling and numb, like I had a muscle knot. I went to the chiropractor, the massage therapist, and the rolfer - and none of them could change the feeling. The numbness increased, as did the banding (now I know what that is!) and the pain in my legs. In mid-September I went to my doctor and mentioned it to him - he said I was overreacting when I mentioned the possibility of MS. Ok, whatever. In October I realized that I had no feeling on the right side of my body - so the doc finally sent me for an MRI. The results came back that I had MS. Huge panic for the doc - put me in the hospital and gave me prednisone. That didn't help. I was sent to the MS clinic in Vancouver (800 miles away) - they told me to go home and rest. Symptoms continued to worsen, and finally in 2006 I had a spinal tap - and the diagnosis of TM. Here I am almost nine years later - managing the pain, and the numbness and the burning, and the . . . and the . . . - I know that you can fill in the blanks. I am working full time - at great expense to my body and my fatigue - but I have no choice as I am a walking wounded. On bad days I use a cane, on worse days I stay in bed, and on good days I am so grateful. The lesion is at T4-5 Of course the diagnosis is idiopathic TM - but interestingly enough about a month earlier I fell out of the back of a pickup truck (after using an outhouse in the back of the truck while partying with the seniors - be careful when partying with seniors!) and broke my wrist. To this day I believe the blunt force trauma of hitting the ground that hard - the stairs collapsed - contributed or caused the TM. I have had no further attacks, but I do have some excruciating days. Janet BC Canada attachment: j_dunn.vcf
Re: [TMIC] TRANSVERSE MYELITIS
I agree with you Betty. Greg did an excellent job and I wish all physicians would watch it. Some of my family watched the show - many of them cried - To see another person go through what I did many years ago was a real eye-opener. One of my sisters-in-law works in the medical field here in Idaho and she has seen 4 people in the last year or so with the diagnosis of TM. One was air lifted to a larger hospital here where I live. If you want to see something interesting, take a look in the TMA Members Directory and see how many people in your state or province have TM. The numbers really surprised me. Kudos to Greg! Linda - Original Message - From: Beeclarkmailto:beecl...@aol.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Thursday, September 09, 2010 4:51 PM Subject: Re: [TMIC] TRANSVERSE MYELITIS My mistake... the episode is titled The Toddler Who Stopped Walking and it originally aired last Sunday night. I watched it and it was GREAT! It would be wonderful if all the physicians who are not familiar with TM would watch! Betty In a message dated 09/09/10 15:42:43 Pacific Daylight Time, Beeclark writes: The story is about Greg Sapp who lives in Statesboro, GA. The show originally aired this last Monday and will repeat next week. Here's a link about the show. Unfortunately, those who don't have cable and don't get this particular station won't be able to see it... and for those who can get it, be aware, if you try to program your DVR to record - I believe the show is be labeled The Girl Who Stopped Walking - Greg's part of the show is in the second story being highlighted: Mystery Diagnosis on Discovery Health Channel (Monday) will be about a man with TM. http://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosishttp://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosis Betty (in Northern California) In a message dated 09/09/10 13:27:49 Pacific Daylight Time, jan...@centurytel.net writes: My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
Re: [TMIC] TRANSVERSE MYELITIS
I agree, Janice From: Beeclark Sent: Friday, September 10, 2010 12:22 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] TRANSVERSE MYELITIS Not really... but as I told Greg on his Facebook, it really brought me back to the day I contracted it. His experience was so very close to mine. He regained slightly more function than I, but I think it's wonderful to have something visual for others to see what we - and our families have gone through. Greg and his parents re-enact exactly what occurred as the virus began to affect him and what it took for him to get to the point he's at now, two years later. I also think it shows how important it is to find a doctor who, if they're not already familiar with TM, is willing to explore all avenues to find out how to treat you. Betty In a message dated 09/09/10 20:07:35 Pacific Daylight Time, jan...@centurytel.net writes: Betty, did you learn anything different from watching - meds, exercising, etc.? Janice From: Beeclark Sent: Thursday, September 09, 2010 5:51 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] TRANSVERSE MYELITIS My mistake... the episode is titled The Toddler Who Stopped Walking and it originally aired last Sunday night. I watched it and it was GREAT! It would be wonderful if all the physicians who are not familiar with TM would watch! Betty In a message dated 09/09/10 15:42:43 Pacific Daylight Time, Beeclark writes: The story is about Greg Sapp who lives in Statesboro, GA. The show originally aired this last Monday and will repeat next week. Here's a link about the show. Unfortunately, those who don't have cable and don't get this particular station won't be able to see it... and for those who can get it, be aware, if you try to program your DVR to record - I believe the show is be labeled The Girl Who Stopped Walking - Greg's part of the show is in the second story being highlighted: Mystery Diagnosis on Discovery Health Channel (Monday) will be about a man with TM. http://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosis Betty (in Northern California) In a message dated 09/09/10 13:27:49 Pacific Daylight Time, jan...@centurytel.net writes: My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
[TMIC] TRANSVERSE MYELITIS
My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
Re: [TMIC] TRANSVERSE MYELITIS
Thanks! What do you mean by the second half? the second half hour? My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice --
Re: [TMIC] TRANSVERSE MYELITIS
The story is about Greg Sapp who lives in Statesboro, GA. The show originally aired this last Monday and will repeat next week. Here's a link about the show. Unfortunately, those who don't have cable and don't get this particular station won't be able to see it... and for those who can get it, be aware, if you try to program your DVR to record - I believe the show is be labeled The Girl Who Stopped Walking - Greg's part of the show is in the second story being highlighted: Mystery Diagnosis on Discovery Health Channel (Monday) will be about a man with TM. http://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosis Betty (in Northern California) In a message dated 09/09/10 13:27:49 Pacific Daylight Time, jan...@centurytel.net writes: My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
Re: [TMIC] TRANSVERSE MYELITIS
My mistake... the episode is titled The Toddler Who Stopped Walking and it originally aired last Sunday night. I watched it and it was GREAT! It would be wonderful if all the physicians who are not familiar with TM would watch! Betty In a message dated 09/09/10 15:42:43 Pacific Daylight Time, Beeclark writes: The story is about Greg Sapp who lives in Statesboro, GA. The show originally aired this last Monday and will repeat next week. Here's a link about the show. Unfortunately, those who don't have cable and don't get this particular station won't be able to see it... and for those who can get it, be aware, if you try to program your DVR to record - I believe the show is be labeled The Girl Who Stopped Walking - Greg's part of the show is in the second story being highlighted: Mystery Diagnosis on Discovery Health Channel (Monday) will be about a man with TM. http://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosis Betty (in Northern California) In a message dated 09/09/10 13:27:49 Pacific Daylight Time, jan...@centurytel.net writes: My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
Re: [TMIC] TRANSVERSE MYELITIS
Yes, it is an hour show and it looks like it will be the 2nd half on TM. Don't know what is on the first half. Janice -- From: Akua a...@artfarm.com Sent: Thursday, September 09, 2010 5:32 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] TRANSVERSE MYELITIS Thanks! What do you mean by the second half? the second half hour? My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice --
Re: [TMIC] TRANSVERSE MYELITIS
Betty, did you learn anything different from watching - meds, exercising, etc.? Janice From: Beeclark Sent: Thursday, September 09, 2010 5:51 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] TRANSVERSE MYELITIS My mistake... the episode is titled The Toddler Who Stopped Walking and it originally aired last Sunday night. I watched it and it was GREAT! It would be wonderful if all the physicians who are not familiar with TM would watch! Betty In a message dated 09/09/10 15:42:43 Pacific Daylight Time, Beeclark writes: The story is about Greg Sapp who lives in Statesboro, GA. The show originally aired this last Monday and will repeat next week. Here's a link about the show. Unfortunately, those who don't have cable and don't get this particular station won't be able to see it... and for those who can get it, be aware, if you try to program your DVR to record - I believe the show is be labeled The Girl Who Stopped Walking - Greg's part of the show is in the second story being highlighted: Mystery Diagnosis on Discovery Health Channel (Monday) will be about a man with TM. http://savannahnow.com/news/2010-09-05/local-man-featured-mystery-diagnosis Betty (in Northern California) In a message dated 09/09/10 13:27:49 Pacific Daylight Time, jan...@centurytel.net writes: My sister, who lives in Savannah, told me about a Transverse Myelitis patient that lives near there. He will be on the 2nd half of Discovery Health channel. Dates are: Saturday, Sept. 11 at 5:00pm and Monday, Sept. 13 at 3:00pm Should be interesting and am glad that TM is getting some recognition. Janice
Re: [TMIC] Transverse Myelitis Network
Some folks will NEVER EVER NEVER learn how to use bcc's.oh well BobbyJim From: Lori Biehler To: 'Dex Packard' Cc: 'TMIC' Sent: Sunday, June 28, 2009 8:47 PM Subject: RE: [TMIC] Transverse Myelitis Network Yes I know that, just doesn't seem really important when one deals with really sick people or people reaching out for help. I pick my battles. Enough said. Peace Out! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 9:41 PM To: Lori Biehler; 'Todd Tarno'; ladyno...@aol.com Cc: 'TMIC' Subject: Re: [TMIC] Transverse Myelitis Network Did it ever occur to you that every e-mail address you put in a message can be copied by others? From: Lori Biehler To: 'Dex Packard' ; 'Todd Tarno' ; ladyno...@aol.com Cc: 'TMIC' Sent: Sunday, June 28, 2009 6:18 PM Subject: RE: [TMIC] Transverse Myelitis Network If reading a bunch of addresses was the worst thing that happened to me this year, I would really consider myself blessed! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 7:11 PM To: Todd Tarno; ladyno...@aol.com Cc: TMIC Subject: Re: [TMIC] Transverse Myelitis Network I wish you people would learn to use BCC! That means that there is only one address showing not a whole bunch - Original Message - From: Todd Tarno To: ladyno...@aol.com Cc: TMIC Sent: Sunday, June 28, 2009 3:25 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes
Re: [TMIC] Transverse Myelitis Network
That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! Download the AOL Classifieds Toolbar for local deals at your fingertips. Dell Days of Deals! June 15-24 - A New Deal Everyday!
Re: [TMIC] Transverse Myelitis Network
I wish you people would learn to use BCC! That means that there is only one address showing not a whole bunch - Original Message - From: Todd Tarno To: ladyno...@aol.com Cc: TMIC Sent: Sunday, June 28, 2009 3:25 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! -- Download the AOL Classifieds Toolbar for local deals at your fingertips. -- Dell Days of Deals! June 15-24 - A New Deal Everyday!
RE: [TMIC] Transverse Myelitis Network
If reading a bunch of addresses was the worst thing that happened to me this year, I would really consider myself blessed! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 7:11 PM To: Todd Tarno; ladyno...@aol.com Cc: TMIC Subject: Re: [TMIC] Transverse Myelitis Network I wish you people would learn to use BCC! That means that there is only one address showing not a whole bunch - Original Message - From: Todd Tarno mailto:toddtm2...@sbcglobal.net To: ladyno...@aol.com Cc: TMIC mailto:tmic-list@eskimo.com Sent: Sunday, June 28, 2009 3:25 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com http://us.mc822.mail.yahoo.com/mc/compose?to=ladyno...@aol.com writes: 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 http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=htt p://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=Jun eExcfooterNO62 Yours in Just 2 Easy Steps! _ Download the AOL Classifieds Toolbar http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown00 04 for local deals at your fingertips. _ Dell Days of Deals! June 15-24 - A New Deal Everyday! http://pr.atwola.com/promoclk/100126575x1222865043x1201494942/aol?redir=htt p:%2F%2Fad.doubleclick.net%2Fclk%3B215692145%3B38015538%3Bh
Re: [TMIC] Transverse Myelitis Network
Todd' one of the reasons I reclused from this web site is because I had three members of my immediately family die and I needed to deal with funeral homes and I actually had to ask this list for donations and the people that I thought would help, did just did and I don't remember seeing Todd Tarno's name even as much as a salutation. I'm not picking on you but I know this, If you send a e-mail to Jim or anyone else on this list your email will eventually be answered. This is an amazing web site and if you are not satisfied with your business here, you can always go some where else and I guarentee you'll not find as many people who for you, I'm sorry your a quad, and is every one else is too. So please stop gripping because you feel your 2 cents are not heard, because it is heard. and we all love you and your e-mail gets heard. This was Jim dream and he could not be able to manage it on his on. We all keep it working. So be carefull when you insinuate. Your friend Rick Ashford. From: Todd Tarno toddtm2...@sbcglobal.net To: ladyno...@aol.com Cc: TMIC tmic-list@eskimo.com Sent: Sunday, June 28, 2009 5:25:50 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! Download the AOL Classifieds Toolbar for local deals at your fingertips. Dell Days of Deals! June 15-24 - A New Deal Everyday!
Re: [TMIC] Transverse Myelitis Network
Did it ever occur to you that every e-mail address you put in a message can be copied by others? - Original Message - From: Lori Biehler To: 'Dex Packard' ; 'Todd Tarno' ; ladyno...@aol.com Cc: 'TMIC' Sent: Sunday, June 28, 2009 6:18 PM Subject: RE: [TMIC] Transverse Myelitis Network If reading a bunch of addresses was the worst thing that happened to me this year, I would really consider myself blessed! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 7:11 PM To: Todd Tarno; ladyno...@aol.com Cc: TMIC Subject: Re: [TMIC] Transverse Myelitis Network I wish you people would learn to use BCC! That means that there is only one address showing not a whole bunch - Original Message - From: Todd Tarno To: ladyno...@aol.com Cc: TMIC Sent: Sunday, June 28, 2009 3:25 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! Download the AOL Classifieds Toolbar
RE: [TMIC] Transverse Myelitis Network
Yes I know that, just doesn't seem really important when one deals with really sick people or people reaching out for help. I pick my battles. Enough said. Peace Out! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 9:41 PM To: Lori Biehler; 'Todd Tarno'; ladyno...@aol.com Cc: 'TMIC' Subject: Re: [TMIC] Transverse Myelitis Network Did it ever occur to you that every e-mail address you put in a message can be copied by others? - Original Message - From: Lori Biehler mailto:lbieh...@earthlink.net To: 'Dex Packard' mailto:d...@centurytel.net ; 'Todd mailto:toddtm2...@sbcglobal.net Tarno' ; ladyno...@aol.com Cc: 'TMIC' mailto:tmic-list@eskimo.com Sent: Sunday, June 28, 2009 6:18 PM Subject: RE: [TMIC] Transverse Myelitis Network If reading a bunch of addresses was the worst thing that happened to me this year, I would really consider myself blessed! From: Dex Packard [mailto:d...@centurytel.net] Sent: Sunday, June 28, 2009 7:11 PM To: Todd Tarno; ladyno...@aol.com Cc: TMIC Subject: Re: [TMIC] Transverse Myelitis Network I wish you people would learn to use BCC! That means that there is only one address showing not a whole bunch - Original Message - From: Todd Tarno mailto:toddtm2...@sbcglobal.net To: ladyno...@aol.com Cc: TMIC mailto:tmic-list@eskimo.com Sent: Sunday, June 28, 2009 3:25 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com http://us.mc822.mail.yahoo.com/mc/compose?to=ladyno...@aol.com writes: 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 http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=htt p://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=Jun eExcfooterNO62 Yours
Re: [TMIC] Transverse Myelitis Network
Good grief, Rick. Todd was not at all griping or insinuating anything. He wrote a very gracious response to the previous e-mails in this thread. Barbara H. In a message dated 6/28/2009 9:19:53 P.M. Eastern Daylight Time, ashfo...@att.net writes: Todd' one of the reasons I reclused from this web site is because I had three members of my immediately family die and I needed to deal with funeral homes and I actually had to ask this list for donations and the people that I thought would help, did just did and I don't remember seeing Todd Tarno's name even as much as a salutation. I'm not picking on you but I know this, If you send a e-mail to Jim or anyone else on this list your email will eventually be answered. This is an amazing web site and if you are not satisfied with your business here, you can always go some where else and I guarentee you'll not find as many people who for you, I'm sorry your a quad, and is every one else is too. So please stop gripping because you feel your 2 cents are not heard, because it is heard. and we all love you and your e-mail gets heard. This was Jim dream and he could not be able to manage it on his on. We all keep it working. So be carefull when you insinuate. Your friend Rick Ashford. From: Todd Tarno toddtm2...@sbcglobal.net To: ladyno...@aol.com Cc: TMIC tmic-list@eskimo.com Sent: Sunday, June 28, 2009 5:25:50 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, _ladyno...@aol.com_ (http://us.mc822.mail.yahoo.com/mc/compose?to=ladyno...@aol.com) writes: 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
Re: [TMIC] Transverse Myelitis Network
Barbara, I aslo read the same, Looks like Todd was giving kuddos to the TM quads that were able to type lengthly emails here is what he wrote and as far as I can see it is nothing short of praise how can the below be misread or how was it put Rick? So be carefull when you insinuate (Todds email) I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. -- Original message from jharpe...@aol.com: -- Good grief, Rick. Todd was not at all griping or insinuating anything. He wrote a very gracious response to the previous e-mails in this thread. Barbara H. In a message dated 6/28/2009 9:19:53 P.M. Eastern Daylight Time, ashfo...@att.net writes: Todd' one of the reasons I reclused from this web site is because I had three members of my immediately family die and I needed to deal with funeral homes and I actually had to ask this list for donations and the people that I thought would help, did just did and I don't remember seeing Todd Tarno's name even as much as a salutation. I'm not picking on you but I know this, If you send a e-mail to Jim or anyone else on this list your email will eventually be answered. This is an amazing web site and if you are not satisfied with your business here, you can always go some where else and I guarentee you'll not find as many peoplewho for you, I'm sorry your a quad, and is every one else is too. So please stop gripping because you feel your 2 cents are not heard, because it is heard. and we all love you and your e-mail gets heard. This was Jim" dream and he could not be able to manage it on his on. We all keep it working. So be carefull when you insinuate. Your friend Rick Ashford. From: Todd Tarno toddtm2...@sbcglobal.netTo: ladyno...@aol.comCc: TMIC tmic-list@eskimo.comSent: Sunday, June 28, 2009 5:25:50 PMSubject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping upwith this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.comSubject: Re: [TMIC] Transverse Myelitis NetworkTo: heyjude48...@aol.com, tmic-list@eskimo.comDate: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again.-Original Message-From: heyjude48...@aol.comTo: ladyno...@aol.comSent: Wed, Jun 17, 2009 4:26 amSubject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: I am also a member of the paraplegic/quadriplegic website that Jim has started. Although I have TM, which left me a quadripleg
Re: [TMIC] Transverse Myelitis Network
Barbara, I apoligize, I was wrong and the message was taken in the wrong frame of mind. Please forgive me Todd. I have noone but myself to blame for the rudness. Since new years eve I have lost My Son, My Father, and my favorite Aunt. I suspose I was just lashing. I'm sorry that I spoke to you in such a way. I'm para and I have no Idea how the Quads feel. It is my worst nightmare to be in your position. Please, except my appoligy'. Rick From: jharpe...@aol.com jharpe...@aol.com To: ashfo...@att.net; toddtm2...@sbcglobal.net Cc: tmic-list@eskimo.com Sent: Sunday, June 28, 2009 8:52:18 PM Subject: Re: [TMIC] Transverse Myelitis Network Good grief, Rick. Todd was not at all griping or insinuating anything. He wrote a very gracious response to the previous e-mails in this thread. Barbara H. In a message dated 6/28/2009 9:19:53 P.M. Eastern Daylight Time, ashfo...@att.net writes: Todd' one of the reasons I reclused from this web site is because I had three members of my immediately family die and I needed to deal with funeral homes and I actually had to ask this list for donations and the people that I thought would help, did just did and I don't remember seeing Todd Tarno's name even as much as a salutation. I'm not picking on you but I know this, If you send a e-mail to Jim or anyone else on this list your email will eventually be answered. This is an amazing web site and if you are not satisfied with your business here, you can always go some where else and I guarentee you'll not find as many people who for you, I'm sorry your a quad, and is every one else is too. So please stop gripping because you feel your 2 cents are not heard, because it is heard. and we all love you and your e-mail gets heard. This was Jim dream and he could not be able to manage it on his on. We all keep it working. So be carefull when you insinuate. Your friend Rick Ashford. From: Todd Tarno toddtm2...@sbcglobal.net To: ladyno...@aol.com Cc: TMIC tmic-list@eskimo.com Sent: Sunday, June 28, 2009 5:25:50 PM Subject: Re: [TMIC] Transverse Myelitis Network That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude
Re: [TMIC] Transverse Myelitis Network
I know that I have been affected by the loss of my dear friend, and hope that I haven't offended anyone. I love you all so much and could not live my life without any one of you. Each of you have made a difference to me and helped me through the times I was in the hospital and when I broke my legs. You will never know how I feel about each and every one of you. Pam was not the only friend I have here on the List...that is for sure. I love all of you and I mean that with all of my heart. Maybe it might not seem like it, but it is true...From the bottom of my heart, FTBOMH, Judy In a message dated 6/17/2009 10:01:02 P.M. Eastern Daylight Time, patticoo...@wi.rr.com writes: I HAVE ALWAYS FELT VERY WELCOME BY EVERYONE ON THIS SITE, EVEN THOUGH I DO NOT SUFFER FROM SO MANY OF THE PAIN AND SUFFERING SO MANY OF YOU DO. I DO HAVE PAIN BUT NOTHING I CAN’T LIVE WITH SINCE I HAVE NO CHOICE. IT IS THE COMMUNICATION WITH ALL OF YOU THAT HAS HELPED ME SO VERY MUCH. I WANT TO SAY THANKS TO YOU ALL. I MYSELF HAVE FOUND THAT SINCE WE LOST PAM, I HAVE BEEN DOWN IN THE DUMPS WHEN I REALLY HAVE NO REASON TO BE. I THINK A LITTLE DEPRESSION HAS SETTLED ON ALL OF US. I KNOW IT HAS ME. I FIND MYSELF FEELING MORE SORRY FOR MYSELF THAN I HAVE IN A LONG TIME. I MISS MY DAILY E-MAILS FROM PAM WITH HER FUNNY JOKES. I THINK AS A RESULT WE ARE ALL A LITTLE TESTY WITH EACH OTHER. I KNOW PAM WOULD WANT US ALL TO GET ALONG. I HOPE THAT TIME WILL HEAL US ALL. AT LEAST I SO HOPE SO. BLESSINGS TO ALL OF YOU. ***TIAD** AND LET’S HOPE IT IS A BETTER ONE FOR US ALL. PATTI - WISCONSIN From: Jill Z [mailto:jillybean60...@yahoo.com] Sent: Wednesday, June 17, 2009 6:05 PM To: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.com; Tracey L. Black Subject: RE: [TMIC] Transverse Myelitis Network Well said Tracy! Jill --- On Wed, 6/17/09, Tracey L. Black tracey.bl...@hnoins.com wrote: From: Tracey L. Black tracey.bl...@hnoins.com Subject: RE: [TMIC] Transverse Myelitis Network To: ladyno...@aol.com, _heyjude48...@aol.com_ (mailto:heyjude48...@aol.com) , tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 1:14 PM As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your
Re: [TMIC] Transverse Myelitis Network
I second that emotion 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] Transverse Myelitis Network
Jude, It's not that I think any one site is better than the other, and is not so much about interaction, as information It's just that quadriplegics have more and different issues to deal with. There is also a site for TM quads who are vent dependent, because they have more and different issues than quads who are not vent dependence. Jim Lubin started all of the sites, I'm sure out of necessity. We're just trying to find as much information to help us as possible. Every little bit helps. Naomi C-4 Quadriplegic, since July 2 2005 Due to Transverse Myelitis -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:24 am Subject: Re: [TMIC] Transverse Myelitis Network Naomi, ? Why do you think that you get more out of one group than the other?? Is there more interaction?? More topics of interest?? ? I still am loyal to the TM site because it is the original site that Jim started and put so much work into.? But, I am hungering for a site that has more interaction between members regarding TM. ? We don't seem to be getting new members like we used to so there isn't much talk about different medications, symptoms and general TM questions. ? I know a lot about TM but don't think I will ever know everything.? So, I like to help those I can and be helped by those who know the answers to my questions. ? Confused, Jude ? In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! Download the AOL Classifieds Toolbar for local deals at your fingertips.
Re: [TMIC] Transverse Myelitis Network
*Hi Naomi, * *Very well said. It's like that for NMO patients also. Although we too, suffer from non traumatic SCI, our needs are very different than the typical TM patient. Our treatments differ greatly---many of us are on heavy duty anti-rejection/immunosuppressant drugs, and many (Myself included.) are on chemotherapy agents. We too have members who are quads, and more than a few are vented. Many of them frequent other communities and we always encourage that. If a patient can find support and validation from other patients in the same boat at a different site, we encourage them. Oftentimes, the information that they bring back to us is priceless. * *Be well, * *Grace* * *
Re: [TMIC] Transverse Myelitis Network
Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back?? Why don't you simply quit this site and use the other one that you say you prefer?? What's the big deal? ? Jude ? In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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! Download the AOL Classifieds Toolbar for local deals at your fingertips.
RE: [TMIC] Transverse Myelitis Network
As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don't write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone's emails b/c they make me feel so much more blessed that my daughter didn't get inflicted as badly as others although she does deal with one or two of the symptoms. I can't imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn't had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you
Re: [TMIC] Transverse Myelitis Network
Ihave a membershipat Costco, and at Sam's Club. Why? Because I like one store for certain items which I can't get at the other store, and vice versa. Should I quit one membership and stay "loyal" to only one of the stores? Or can I go to both stores if I like? -Original Message- From: ladyno...@aol.com Sent: Jun 17, 2009 9:23 AM To: heyjude48...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, It's not that I think any one site is better than the other, and is not so much about interaction, as information It's just that quadriplegics have more and different issues to deal with. There is also a site for TM quads who are vent dependent, because they have more and different issues than quads who are not vent dependence. Jim Lubin started all of the sites, I'm sure out of necessity. We're just trying to find as much information to help us as possible. Every little bit helps. Naomi C-4 Quadriplegic, since July 2 2005 Due to Transverse Myelitis-Original Message-From: heyjude48...@aol.comTo: ladyno...@aol.comSent: Wed, Jun 17, 2009 4:24 amSubject: Re: [TMIC] Transverse Myelitis Network Naomi, Why do you think that you get more out of one group than the other? Is there more interaction? More topics of interest? I still am loyal to the TM site because it is the original site that Jim started and put so much work into. But, I am hungering for a site that has more interaction between members regarding TM. We don't seem to be getting new members like we used to so there isn't much talk about different medications, symptoms and general TM questions. I know a lot about TM but don't think I will ever know everything. So, I like to help those I can and be helped by those who know the answers to my questions. Confused, Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: 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. NaomiC-4 Quadriplegic, since July 2, 2005Due to Transverse Myelitis An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Download the AOL Classifieds Toolbar for local deals at your fingertips.<ZZZ!-- -- of end AOLMsgPart_2_6623438d-7755-415e-9959-ff57cc244c55> Dell Days of Deals! June 15-24 - A New Deal Everyday! Debbie dca...@earthlink.net
Fw: [TMIC] Transverse Myelitis Network
AMEN Thank you Tracey for putting this so eloquently. I am here as a caregiver and I have never been afraid to ask any question. Sometimes I too, I have felt rejected .. so now I try not to take it personally. I have learned so much from all my TM Family and I thank each and everyone of you for sharing. I am quite shy by nature and usually observe. However, when I feel passionate about something/someone I let them know. thoughts and prayers in honor of Pam TIAD, Catherine From: Tracey L. Black tracey.bl...@hnoins.comTo: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.comSent: Wednesday, June 17, 2009 2:14:15 PMSubject: RE: [TMIC] Transverse Myelitis NetworkAs a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!!Tracey L. BlackCertified Insurance Service RepresentativeHockley O'Donnell Insurance AgencyPhone- 717-334-6741, x 29Fax-717-334-3414My hours: 9:00 a.m. - 5:00 p.m.Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retainedFrom:ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PMTo: heyjude48...@aol.com; tmic-list@eskimo.comSubject: Re: [TMIC] Transverse Myelitis NetworkJude,First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information.I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other.I have met many people through this site, one who has become my best friend who has TM
RE: [TMIC] Transverse Myelitis Network
Well said Tracy! Jill --- On Wed, 6/17/09, Tracey L. Black tracey.bl...@hnoins.com wrote: From: Tracey L. Black tracey.bl...@hnoins.com Subject: RE: [TMIC] Transverse Myelitis Network To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 1:14 PM As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression
Re: [TMIC] Transverse Myelitis Network
Tracey, I was shocked to read that your 11 year old daughter had TM. Bless her heart, she has come a long way and I know that that is only done with hard work. I am sure it was a family affair in getting her to where she is. Bless you all. Janice - Original Message - From: Jill Z To: ladyno...@aol.com ; heyjude48...@aol.com ; tmic-list@eskimo.com ; Tracey L. Black Sent: Wednesday, June 17, 2009 6:05 PM Subject: RE: [TMIC] Transverse Myelitis Network Well said Tracy! Jill --- On Wed, 6/17/09, Tracey L. Black tracey.bl...@hnoins.com wrote: From: Tracey L. Black tracey.bl...@hnoins.com Subject: RE: [TMIC] Transverse Myelitis Network To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 1:14 PM As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came
RE: [TMIC] Transverse Myelitis Network
I HAVE ALWAYS FELT VERY WELCOME BY EVERYONE ON THIS SITE, EVEN THOUGH I DO NOT SUFFER FROM SO MANY OF THE PAIN AND SUFFERING SO MANY OF YOU DO. I DO HAVE PAIN BUT NOTHING I CAN’T LIVE WITH SINCE I HAVE NO CHOICE. IT IS THE COMMUNICATION WITH ALL OF YOU THAT HAS HELPED ME SO VERY MUCH. I WANT TO SAY THANKS TO YOU ALL. I MYSELF HAVE FOUND THAT SINCE WE LOST PAM, I HAVE BEEN DOWN IN THE DUMPS WHEN I REALLY HAVE NO REASON TO BE. I THINK A LITTLE DEPRESSION HAS SETTLED ON ALL OF US. I KNOW IT HAS ME. I FIND MYSELF FEELING MORE SORRY FOR MYSELF THAN I HAVE IN A LONG TIME. I MISS MY DAILY E-MAILS FROM PAM WITH HER FUNNY JOKES. I THINK AS A RESULT WE ARE ALL A LITTLE TESTY WITH EACH OTHER. I KNOW PAM WOULD WANT US ALL TO GET ALONG. I HOPE THAT TIME WILL HEAL US ALL. AT LEAST I SO HOPE SO. BLESSINGS TO ALL OF YOU. ***TIAD** AND LET’S HOPE IT IS A BETTER ONE FOR US ALL. PATTI - WISCONSIN From: Jill Z [mailto:jillybean60...@yahoo.com] Sent: Wednesday, June 17, 2009 6:05 PM To: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.com; Tracey L. Black Subject: RE: [TMIC] Transverse Myelitis Network Well said Tracy! Jill --- On Wed, 6/17/09, Tracey L. Black tracey.bl...@hnoins.com wrote: From: Tracey L. Black tracey.bl...@hnoins.com Subject: RE: [TMIC] Transverse Myelitis Network To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 1:14 PM As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions
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] 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] 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)
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] 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] transverse myelitis
Hi Betty, Ella is good people to know and converse with, especially if you have questions or problems. I am like Ella in that I have a constant buzzing feeling throughout my body which is similar to when one of your extremities falls asleep. I hate it... Love You, Jude In a message dated 4/19/2009 4:01:13 P.M. Eastern Daylight Time, alle...@aol.com writes: Welcome Betty, One symptom I'd say we all have is definitely the banding yet other symptoms do vary. I'm a paraplegic since 9/2000, lesion T6-10. I don't have the numbness but a buzzing feeling that is uncomfortable without meds. Ask us anything you wish and you will get an answer. Have you talked with anyone since 2004 with TM? You have a group of friends here. Ella in Ohio A Good Credit Score is 700 or Above. _See yours in just 2 easy steps!_ (http://pr.atwola.com/promoclk/100126575x1220814852x1201410738/aol?redir=http:/ /www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Aprilfoote r419NO62) **Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003)
[TMIC] transverse myelitis
I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon
Re: [TMIC] transverse myelitis
Welcome, Betty and you have come to a wonderful group of people who will soon become friends! Just keep reading and you will soon learn all sorts of different things about TM from physical to emotional and everything in between. The banding you talk about is a real issue to some of us. Mine is right at the exact same area where my bra is and is really painful a good part of the time but meds truly do help. Everyone has to find their own med solution' and that's a whole new area to talk about!!! Again, welcome, and you are blessed for having found this good group! Jeanne in Dayton, WA ---Original Message--- From: Betty Shaffer Date: 4/19/2009 11:07:03 AM To: tmic-list@eskimo.com Subject: [TMIC] transverse myelitis I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon SuperStock_1196-107.jpg
Re: [TMIC] transverse myelitis
Betty, Welcome to the group. My lesion was C-5-7 and my symptoms seem very much the same as yours as far as numbness and banding. I like how you put that you need your eyes to see where your feet (and seat) are. How true! It is always a bit amusing to lose a slipper while walking through the house and not even know it! Putting shoes on in the dark is a bad idea--I've put them on the wrong feet a couple of times and got out in public before I noticed. It was nice to hear from you. Gary in Michigan - Original Message - From: Betty Shaffer To: tmic-list@eskimo.com Sent: Sunday, April 19, 2009 12:03 PM Subject: [TMIC] transverse myelitis I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon
Re: [TMIC] transverse myelitis
Jeanne,
My banding was at my bra line, too..I always said
it was the bra God paying me back for hating bras!!
The banding is rare now, after 13 years the 29th of
this month.but it does raise its head once in a
while just to prove 'he' can still wreak havoc
jan
p.s. Welcome, Betty..please know that laughter
is a must in the world of tm!!
--- On Sun, 4/19/09, jrushton jrush...@columbiaenergyllc.com wrote:
#yiv1956273918 v\:* {
}
#yiv1956273918 v\:* {
}
Welcome, Betty and you have come to a wonderful group of people who will soon
become friends! Just keep reading and you will soon learn all sorts of
different things about TM from physical to emotional and everything in
between. The banding you talk about is a real issue to some of us. Mine is
right at the exact same area where my bra is and is really painful a good part
of the time but meds truly do help. Everyone has to find their own med
'solution' and that's a whole new area to talk about!!! Again, welcome, and
you are blessed for having found this good group! Jeanne in Dayton, WA
---Original Message---
From: Betty Shaffer
Date: 4/19/2009 11:07:03 AM
To: tmic-list@eskimo.com
Subject: [TMIC] transverse myelitis
I'm a new subscriber to the TM internet club and find the messages interesting.
I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77.
Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much
discomfort from the banding, especially in my torso and neck. I walk well with
a walker, but need my eyes to tell me where my feet ( and seat) are. Without
the walker , balance is a problem.
Anybody have problems similiar to those ? I live in a retirement home where
I'm able to walk and to exercise 5 days a week, and I know this helps.
There is no support group in the area
Betty in Oregon
Re: [TMIC] transverse myelitis
Welcome Betty, One symptom I'd say we all have is definitely the banding yet other symptoms do vary. I'm a paraplegic since 9/2000, lesion T6-10. I don't have the numbness but a buzzing feeling that is uncomfortable without meds. Ask us anything you wish and you will get an answer. Have you talked with anyone since 2004 with TM? You have a group of friends here. Ella in Ohio **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1220814852x1201410738/aol?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26 hmpgID%3D62%26bcd%3DAprilfooter419NO62)
RE: [TMIC] transverse myelitis
I don't have the banding. I did at the onset of TM but not any longer. From: alle...@aol.com [mailto:alle...@aol.com] Sent: April-19-09 1:58 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] transverse myelitis Welcome Betty, One symptom I'd say we all have is definitely the banding yet other symptoms do vary. I'm a paraplegic since 9/2000, lesion T6-10. I don't have the numbness but a buzzing feeling that is uncomfortable without meds. Ask us anything you wish and you will get an answer. Have you talked with anyone since 2004 with TM? You have a group of friends here. Ella in Ohio _ A Good Credit Score is 700 or Above. See http://pr.atwola.com/promoclk/100126575x1220814852x1201410738/aol?redir=htt p:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID% 3D62%26bcd%3DAprilfooter419NO62 yours in just 2 easy steps!
Re: [TMIC] transverse myelitis
Hi Betty Welcome to our on-line TM family. I was diagnosed in 2003 at age 53 at C4-C6. I also have balance problems and just gave in to using a walker during a short vacation. I was surprised that I was able to walk and enjoy looking at something besides my feet. I hadn't thought about the seat problem, however, your right - I look and touch before I sit. I think we TMers have trust issues. We just don't trust much of anything that has to do with where we are or where we're going to be in the next few seconds! Patti - Michigan Betty Shaffer vasso...@gmail.com wrote: I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon
Re: [TMIC] transverse myelitis
Well, talking about feet. I guess I should say that I don't always watch my feet. Tonight would have been a good time to watch my feet but don't think it would have helped my situation. We drove into our driveway after being at the grandsons first birthday party. Husband lets me out on the driveway as we park two cars in the garage. I got out. My right foot (which is my weak foot) goes out first, followed by me turning my body, putting my left foot out and hoisting myself with my cane etc. I stood up (or tried to, like I usually do). Howevermy right foot remained firmly (and I mean firmly) planted. I moved. My right foot didn't. I was enough out of the car that I shut the car door. Then BAM...down I went. Onto my right hip, side etc. Hubby (thank goodness) couldn't figure out where I moved to so fast. (do any TMer's move fast?) Fortunately he realized that I 'moved too fast'. He got out of the car and there I was. Flat on my side. On the driveway. with my cane and purse with me. Glad he didn't try and drive into the garage. Not sure how much of me was near the car. So..not too sure if looking at my feet would have helped. Haven't had that happen for a while, that my right foot doesn't want to go when I want to. It used to happen quite often. So Pieter had to help me stand up. That is my story and I'm sticking to it. Now I just have to wait and see if I end up with a big bruise on my right hip and see if my right foot will be swollen tomorrow. Hope everyone else had a good weekend. The wee grandson had a good birthday and ate his first taste of chocolate cake. Too cute. Heather in Calgary - Original Message - From: pjv1...@chartermi.net To: tmic-list@eskimo.com; Betty Shaffer vasso...@gmail.com Sent: Sunday, April 19, 2009 6:33 PM Subject: Re: [TMIC] transverse myelitis Hi Betty Welcome to our on-line TM family. I was diagnosed in 2003 at age 53 at C4-C6. I also have balance problems and just gave in to using a walker during a short vacation. I was surprised that I was able to walk and enjoy looking at something besides my feet. I hadn't thought about the seat problem, however, your right - I look and touch before I sit. I think we TMers have trust issues. We just don't trust much of anything that has to do with where we are or where we're going to be in the next few seconds! Patti - Michigan Betty Shaffer vasso...@gmail.com wrote: I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon
Re: [TMIC] transverse myelitis
Ouch, Heather!! I'm glad it wasn't any worse, but I imagine you'll feel pretty sore. It's strange how parts of our bodies don't turn or move how we're expecting them to sometimes. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 4/19/2009 11:21:18 P.M. Eastern Daylight Time, pieterheat...@shaw.ca writes: Well, talking about feet. I guess I should say that I don't always watch my feet. Tonight would have been a good time to watch my feet but don't think it would have helped my situation. We drove into our driveway after being at the grandsons first birthday party. Husband lets me out on the driveway as we park two cars in the garage. I got out. My right foot (which is my weak foot) goes out first, followed by me turning my body, putting my left foot out and hoisting myself with my cane etc. I stood up (or tried to, like I usually do). Howevermy right foot remained firmly (and I mean firmly) planted. I moved. My right foot didn't. I was enough out of the car that I shut the car door. Then BAM...down I went. Onto my right hip, side etc. Hubby (thank goodness) couldn't figure out where I moved to so fast. (do any TMer's move fast?) Fortunately he realized that I 'moved too fast'. He got out of the car and there I was. Flat on my side. On the driveway. with my cane and purse with me. Glad he didn't try and drive into the garage. Not sure how much of me was near the car. So..not too sure if looking at my feet would have helped. Haven't had that happen for a while, that my right foot doesn't want to go when I want to. It used to happen quite often. So Pieter had to help me stand up. That is my story and I'm sticking to it. Now I just have to wait and see if I end up with a big bruise on my right hip and see if my right foot will be swollen tomorrow. Hope everyone else had a good weekend. The wee grandson had a good birthday and ate his first taste of chocolate cake. Too cute. Heather in Calgary - Original Message - From: pjv1...@chartermi.net To: tmic-list@eskimo.com; Betty Shaffer vasso...@gmail.com Sent: Sunday, April 19, 2009 6:33 PM Subject: Re: [TMIC] transverse myelitis Hi Betty Welcome to our on-line TM family. I was diagnosed in 2003 at age 53 at C4-C6. I also have balance problems and just gave in to using a walker during a short vacation. I was surprised that I was able to walk and enjoy looking at something besides my feet. I hadn't thought about the seat problem, however, your right - I look and touch before I sit. I think we TMers have trust issues. We just don't trust much of anything that has to do with where we are or where we're going to be in the next few seconds! Patti - Michigan Betty Shaffer vasso...@gmail.com wrote: I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon **Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003)
Re: [TMIC] transverse myelitis
It is great to have a new member to the best support group around! Actually, you sound as though you are doing quite well. I think balance is a problem for most of us. The more exercise in building strength, the better the balance issue will be. Keep in touch with us and our conversations and I am sure you will see your problems written out by someone else - many times with solutions.Glad you have joined us.Janice - Original Message - From: jrushton To: Betty Shaffer ; tmic Sent: Sunday, April 19, 2009 9:15 AM Subject: Re: [TMIC] transverse myelitis Welcome, Betty and you have come to a wonderful group of people who will soon become friends! Just keep reading and you will soon learn all sorts of different things about TM from physical to emotional and everything in between. The banding you talk about is a real issue to some of us. Mine is right at the exact same area where my bra is and is really painful a good part of the time but meds truly do help. Everyone has to find their own med 'solution' and that's a whole new area to talk about!!! Again, welcome, and you are blessed for having found this good group! Jeanne in Dayton, WA ---Original Message--- From: Betty Shaffer Date: 4/19/2009 11:07:03 AM To: tmic-list@eskimo.com Subject: [TMIC] transverse myelitis I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon SuperStock_1196-107.jpg
RE: [TMIC] transverse myelitis
We haven't had to pay for anything, other than a few deductibles and co-pays b/c the secondary insurance that we have for her doesn't work with the rehab that we took her to in Baltimore. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, July 05, 2007 9:01 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: [TMIC] transverse myelitis Hi, When I first went into the hospital 9/05 the doctors didnt know what the heck I had. So they started me on IVIG. They thought I might have Guilliame Barre Syndrome. I was on it for 5 days - 3 bottles a day. Very fine hospital (teaching hospital) on Long Island in New York. The entire neurological staff could not give a diagnosis - They thought this would help if I had GBS - I was on high dose steroids too. I was fully covered for this, havent paid one medical bill in the nearly 2 years but of course I am on Medicare and AARP as supplementary insurance. No one has since suggested that I go on this treatment again and I have seen many other neurologist since then, including going to the Cleveland clinic. Conclusion by most of them is either a spinal cord stroke or TM. It all ends up as spinal cord damage anyway. HOpe this helps. Stay well, Rosalie See what's free at AOL.com http://www.aol.com?ncid=AOLAOF0002000503 .
[TMIC] transverse myelitis
Hi, When I first went into the hospital 9/05 the doctors didnt know what the heck I had. So they started me on IVIG. They thought I might have Guilliame Barre Syndrome. I was on it for 5 days - 3 bottles a day. Very fine hospital (teaching hospital) on Long Island in New York. The entire neurological staff could not give a diagnosis - They thought this would help if I had GBS - I was on high dose steroids too. I was fully covered for this, havent paid one medical bill in the nearly 2 years but of course I am on Medicare and AARP as supplementary insurance. No one has since suggested that I go on this treatment again and I have seen many other neurologist since then, including going to the Cleveland clinic. Conclusion by most of them is either a spinal cord stroke or TM. It all ends up as spinal cord damage anyway. HOpe this helps. Stay well, Rosalie ** See what's free at http://www.aol.com.
[TMIC] Transverse Myelitis Information - Johns Hopkins
You may all have seen the information on the Johns Hopkins website regarding TM but, for those who may not have read it yet, the address is http://www.hopkinsneuro.org/tm/diseases_and_conditions.cfm They have 3 sections:a general section, oneon Long Term Care (rehabilitation)and another on Associated Diseases. Theysuggest that we discuss the possibilites for rehab, etc., with our doctors. I first saw their information last year after I had been diagnosed with TM and it looks like they may have updated some of it. They mention many of the topics that have been discussed here recently including physiotherapy, bone density testing, etc. I keep wishing someone would come up with a cure to what ails us but, in the meantime, I guess we have to educate ourselves and our doctors when necessary, in order to cope with the problems we face each day. I took a printout of some of the information to my family doctor as she admitted she has no experience with this condition. I'm new to the list and look forward to reading all the information everyone is sharing. Regards. Louise
