Re: [TMIC] able to move slightly
Jim it could be all the Mafia wars you play on facebook!!! Debi W ---Original Message--- From: Jim Lubin Date: 8/24/2009 1:38:52 PM To: tmic-list@eskimo.com Subject: [TMIC] able to move slightly The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Spiral_notebook.jpg
Re: [TMIC] able to move slightly
LOL..well see facebook can make you work your thumb!!!...I am so happy for you...this is amazing. Debi W ---Original Message--- From: Jim Lubin Date: 8/24/2009 4:08:17 PM To: bradebi; tmic-list@eskimo.com Subject: Re: [TMIC] able to move slightly hehe, I wonder. That is really the only thing I have been doing differently lately is playing all those games on Facebook. At 03:46 PM 8/24/2009, bradebi wrote: Jim it could be all the Mafia wars you play on facebook!!! Debi W ---Original Message--- From: Jim Lubin Date: 8/24/2009 1:38:52 PM To: tmic-list@eskimo.com Subject: [TMIC] able to move slightly The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Spiral_notebook.jpg
Re: [TMIC] question
Janice I eat ice...when I am having a flash I drink the Pepsi then eat the ice..all this while I am drenched with sweat and I plop down in front of the fan..it is a wonderful feeling isn't it!? Debi ---Original Message--- From: Janice Date: 8/9/2009 8:50:37 PM To: Janet Dunn; 'Kevin Wolfthal'; tmic-list@eskimo.com Subject: Re: [TMIC] question Janet, Do you also have problems with just sitting in your air-conditioned room, doing nothing, and all of a sudden you can feel yourself getting uncomfortably warm? Or with some activity - like making a bed - and you start dripping with sweat?I live in Missouri and the summers are really hot, the winters really cold - but it doesn't really matter. I still get hit with this. My doc says there is not a lot that can be done without causing other problems.I wear a patch on my arm - clonidine - and that is about all they can do for me, but it doesn't do much good.I just have to quit whatever I am doing, sit down and drink something cold.After a while, I get better.I'm a mess! Janice - Original Message - From: Janet Dunn j.d...@shaw.ca To: 'Kevin Wolfthal' wolft...@optonline.net; tmic-list@eskimo.com Sent: Sunday, August 09, 2009 7:38 PM Subject: RE: [TMIC] question Yes, I have noticed that. It also makes the bladder issues worse. Glad I am not alone in this. I also, being a person from a northern climate, do not know how you down in the warmth stand the heat. Too much heat and my burning bands drive me nuts. Too much cold and I have trouble walking. Maybe I need to be in a bubble. Janet -Original Message- From: Kevin Wolfthal [mailto:wolft...@optonline.net] Sent: August 9, 2009 2:16 PM To: tmic-list@eskimo.com Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin Spiral_notebook.jpg
Re: [TMIC] arts page
What beautiful paintings!!.I love your portraits. ---Original Message--- From: wim from holland Date: 7/5/2009 6:19:01 AM To: TMIC Subject: [TMIC] arts page In my TM time, already 12 years now I started painting as a hobby. Took a few years lessons but the man fall in love and went to Letvia. Because the photo's were not a succes to send them to you, I put them on a page at the internet. The page is: http://members.tele2.nl/jw.deenik05/. Wim from Holand Haal meer uit je Hotmail met Internet Explorer 8. Download nu Spiral_notebook.jpgsg-a00050.gif
Re: [TMIC] Facebook Page
LOL LOL yeah me too I always am telling my Husband just a minute!! I will be there in just 1 more minute!. Debi Jim, You have me laughing so hard now. :-) I'm the same way, though with me it s Mahjongg and the strategy games. If your Mom ends up being too late with dinner, just call me and I'll send over a Pizza. You're a peach! Gracie On Sat, Jun 27, 2009 at 7:40 PM, Jim Lubin jlu...@eskimo.com wrote: It could be... I've been on Facebook for j years and haven't used it as much as I have the last 2 weeks since starting Farm Town. Good thing I finished putting the latest TMA newsletter online before I got into Farm Town, I would have really had some time management problems. I got my mom on it too, which might have been a mistake. When harvest time happens around our diner time, guess which has been coming first? Yup, we have been eating later every night. :-) At 07:01 PM 6/26/2009, Cindy McLeroy wrote:  Now when folks wonder why the list is slow, they should go to facebook and check out Farm Town. That must be where everyone disappears sometimes. - Original Message - From: bradebi To: Akua ; tmic-list@eskimo.com ; Jim Lubin Sent: Friday, June 26, 2009 3:29 PM Subject: Re: [TMIC] Facebook Page I am too!!!...I love Farm Town!.I am taking a break... .I am into building my Zoo right now..it is addicting too!. Debi  ---Original Message--- From: Jim Lubin Date: 6/25/2009 7:37:10 PM To: Akua; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook Page there are several TM-ADEM-NMO groups on Facebook, most are linked here http://www.myelitis.org/support.htm Jim (who has become addicted to the Farm Town game on Facebook) At 06:43 PM 6/24/2009, Akua wrote: I'm digging Facebook--- what about creating a fan page. -- Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Spiral_notebook.jpg
Re: [TMIC] Facebook
Wow Kathy I am right here just click the link! http://www.facebook.com/debi.woodruffwall Debi ---Original Message--- From: LadyOwl1961 Date: 6/29/2009 11:52:13 AM To: tmic-list@eskimo.com Subject: [TMIC] Facebook I am also on Facebook and am now addicted to Farm Town and Farm Ville. My name on Facebook is Kathleen Moorhead Blaschko. Please feel free to add me as a friend. I also go into YoVille quite often. I love facebook as a way to keep a daily update on friends and family. I also am addicted to The Sims, Sims 2 and am thinking of getting into Sims 3. Thanks Kathy
Re: [TMIC] Facebook Page
LOL...I love it..I am playing three games that are so addicting that I forget that I have email I need to be reading.. Now when folks wonder why the list is slow, they should go to facebook and check out Farm Town. That must be where everyone disappears sometimes. - Original Message - From: bradebi To: Akua ; tmic-list@eskimo.com ; Jim Lubin Sent: Friday, June 26, 2009 3:29 PM Subject: Re: [TMIC] Facebook Page I am too!!!...I love Farm Town!.I am taking a break... .I am into building my Zoo right now..it is addicting too!. Debi ---Original Message--- From: Jim Lubin Date: 6/25/2009 7:37:10 PM To: Akua; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook Page there are several TM-ADEM-NMO groups on Facebook, most are linked here http://www.myelitis.org/support.htm Jim (who has become addicted to the Farm Town game on Facebook) At 06:43 PM 6/24/2009, Akua wrote: I'm digging Facebook--- what about creating a fan page. -- Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Spiral_notebook.jpg
Re: [TMIC] Facebook Page
I am too!!!...I love Farm Town!.I am taking a break... .I am into building my Zoo right now..it is addicting too!. Debi ---Original Message--- From: Jim Lubin Date: 6/25/2009 7:37:10 PM To: Akua; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook Page there are several TM-ADEM-NMO groups on Facebook, most are linked here http://www.myelitis.org/support.htm Jim (who has become addicted to the Farm Town game on Facebook) At 06:43 PM 6/24/2009, Akua wrote: I'm digging Facebook--- what about creating a fan page. -- Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Spiral_notebook.jpg
Re: [TMIC]
Jeanne I apologize I didn't reply to this before todayI am in the process of moving..and have been looking for a cute little cabin.. It sure is a mess isn't it?...I am so tired of being so hot all the time. sheese were I live it doesn't get very hot, but to me it is burning me up.. It's pouring down wet old sweat! ..LOL that's cuteI think of it in the same way...it starts on my scalp and I can feel it run all way down to my bra...then nothing..I haven't gotten really cold here yet. I am interested in the bra you are saying here?...were do you get it?.. sorry guys! LOLI have been wearing sports bra's because the band hits me in a different spot. How are your legs?...can you walk? Debi From: jrushton Date: 6/18/2009 6:26:41 PM To: bradebi; tmic Subject: Re: [TMIC] My injury is the exact same area as yours, Debi, and since it happened my thermometer hasn't worked right. I didn't used to seat hardly at all and now right out of the blue, sweat just pours down my face and chest! It's not pretty sweat. It's pouring down wet old sweat! I also wake almost every night and have to take the blankets off of me because I'm so warm. During the day, I get hot and cold so I never know! I did find I have to wear a special kind of bra that doesn't cause too much pressure under my breasts due to the 'band'. It can be so horribly painful and I have found a brand of bra that seems to help. They are the Lilyette and the fabric is wonderful against the skin. You can get them with support or not. Time to go.. I hope this helped a little??? Jeanne ---Original Message--- From: bradebi Date: 6/12/2009 9:27:32 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC] AntiDepressant
Way to go Akua !...when I got my DX of TM..I was put on elavil every night before bed. I was told it was for the chronic pain... But I came to find out it is a antidepressant. And that was it...I didn't get PT at that time because my disability was un-diagnosed for several years...my spastic paraplegia was treated with neurontin..and I had a sleep study because of spasms in the night..and the results came back with I twitch kick and spasm every 20 seconds..and I have a very low breathing and have to have oxygen at night.but because I have TM the Doctor said he couldn't tell if I had sleep apnea or it is the TM causing it. I too have to dress like a dork and I like the fact of being in the chair I can hide if I am wet. When I moved up here..I discovered there isn't many places that are handicap accessible (up in the high Sierras!!)..so I have had to fight to get everything!..and I am fixin to join or help people here that are disabled. and are house bound...So I agree Akua someone needs to teach me how to live like a paraplegic. Debi From: Akua Date: 6/19/2009 1:13:28 PM To: tmic-list@eskimo.com Subject: [TMIC] AntiDepressant One thing the neuro told me in ICU was that an antidepressant was very important because of having to go thru all of the issues of being paralyzed and the changes I would have to go thru with my life. When the Drs said that to me, I wanted to slap them. I wanted a laptop, not a pill. I felt like they were setting me up for further disability. Of course I was unhappy. Fearful even, but I wasn't depressed. I never approached depression til last year when i came home to ramps i couldn't use, no transport and an inaccessible shower--- after waiting over a year for the house rehab by an agency that paid an alleged expert to oversee the construction. This is about externalities blocking me. Too bad the money I don't spend on drugs is not available to me to do the other things I need done: another hour or two of an aide, paratransit, help weeding in the yard, an accessible front ramp, a lift to my second floor... little things that would make a HUGE difference in the quality of my life. Or even--- dare I say--- fixing the condition: a standing machine, an exerciser, water therapy, stem cell therapy... instead of all or any of these things, instead of addressing causes or even teaching me how to live as a paraplegic --- all or any of these --- fix or assist with them before you deem me depressed and prescribe a pill. -- Spiral_notebook.jpg
Re: [TMIC] AntiDepressant
We don't have a Para Transit here..but there is a organization here called OPEN and they will drive someone somewhere..like for example...I have Skin Cancer..there isn't a place for me to go to here, so I have to go to UC Davis in Sacramento..it is about 100 miles away from me...and I don't have a car, we have city busses but they don't go there...so OPEN is going to take me there on June 30th for free...they have a fund raiser once a year to get the money they need..they also do other things for the poor old or disabled ---Original Message--- From: Akua Date: 6/19/2009 3:54:43 PM To: bradebi; tmic-list@eskimo.com Subject: Re: [TMIC] AntiDepressant so I have had to fight to get everything!..and I am fixin to join or help people here that are disabled..and are house bound... YAY Debi!!! I am starting Corning ParaTransit Services--- a paratransit nonprofit. There is next to no public transportation here and no public paratransit. House Bound is not solely a function of disability -- it's about the LACK OF TOOLS. A friend argued with me when i suggested that not everyone who gets Meals on Wheels may need it. She's in New York City with cabs, subways, buses, dial a ride, and deliveries. Up here, NO ONE DELIVERS unless its Drugs, Chinese Food or Pizza No Groceries and no buses to get groceries! 20.8% of my county is Disabled. Perhaps that's why I'm here and afflicted with TM. To make a change! Dare to Struggle! Dare to Win! Akua --Spiral_notebook.jpg
Re: [TMIC]
Lynne were do you find a chillow? Debi ---Original Message--- From: lynne myers Date: 06/17/09 06:33:50 To: kimr1...@bellsouth.net; tmic Subject: Re: [TMIC] I sleep with a Chillow at night and it helps a great deal. It is a gel filled pad for your pillow and now I dont have to keep changing pillows all night to find a cooler feeling one. Lynne --- On Tue, 6/16/09, kimr1...@bellsouth.net kimr1...@bellsouth.net wrote: From: kimr1...@bellsouth.net kimr1...@bellsouth.net Subject: Re: [TMIC] To: Janice jan...@centurytel.net, bradebi brad...@gmail.com, transverse myelitis tmic-list@eskimo.com Date: Tuesday, June 16, 2009, 11:45 PM no but will give it a try -- Original message from Janice jan...@centurytel.net: -- Have you tried sleeping with cold packs under your neck? Might help Janice Spiral_notebook.jpg
Re: [TMIC]
That's what I am saying...how are we to know the difference...My DH says it is Menopause hyped up with TM!!...who knows! ---Original Message--- From: kimr1...@bellsouth.net Date: 6/15/2009 6:41:01 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause -- Original message from bradebi brad...@gmail.com: -- I would be more like you in temperatures but were I live there isn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm.. and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite.All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
Well everyone thinks its funny to see...but we live in a small house and the house stays hot to me...so I go out to cool off...LOL From: Janice Date: 6/16/2009 7:56:49 PM To: bradebi; transverse myelitis Subject: Re: [TMIC] I bet that looks funny seeing someone dressed like that playing in the snow! Bet it feels good though. My husband has learned to dress warm in the winter in the house because we keep it really cool. When our friends come over, they automatically grab the afghans! Janice - Original Message - From: bradebi To: transverse myelitis ; Janice Sent: Friday, June 12, 2009 9:26 PM Subject: Re: [TMIC] Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
Yes I have to have a fan on me all the time. Debi ---Original Message--- From: Janice Date: 6/16/2009 8:01:24 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] Debi, Do you use fans? Air movement is really important for me. Janice - Original Message - From: bradebi To: transverse myelitis ; kimr1...@bellsouth.net ; Janice Sent: Monday, June 15, 2009 2:50 PM Subject: Re: [TMIC] I would be more like you in temperatures but were I live there isn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm.. and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite.All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
No it comes at any time I can be just sitting here at the computer or watching TV. Debi ---Original Message--- From: Janice Date: 6/16/2009 8:03:08 PM To: kimr1...@bellsouth.net; bradebi; transverse myelitis Subject: Re: [TMIC] How long does the hot sensation last?Is it only after exertion? Janice - Original Message - From: kimr1...@bellsouth.net To: bradebi ; transverse myelitis ; Janice Sent: Monday, June 15, 2009 8:40 PM Subject: Re: [TMIC] OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause -- Original message from bradebi brad...@gmail.com: -- I would be more like you in temperatures but were I live there isn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm.. and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite.All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
LOL...can I come too?! Debi . ---Original Message--- From: kimr1...@bellsouth.net Date: 6/16/2009 8:43:27 PM To: Janice; bradebi; transverse myelitis Subject: Re: [TMIC] Plan B is for me to moce into an IGGLOO! -- Original message from Janice jan...@centurytel.net: -- Turn that AC down!!! I see you are definitely into the air movement like I am. Sure helps.I also wear a patch on my are to help with overheating.. It is clonidine - so far it doesn't work I need to talk to my doc to see what plan B is. Janice - Original Message - From: kimr1...@bellsouth.net To: Janice ; bradebi ; transverse myelitis Sent: Tuesday, June 16, 2009 10:04 PM Subject: Re: [TMIC] AC is set at 74 right now just in the living room we have 1 ceiling fan and 4 floor fans and yep, still warm bedroom has 2 ceiling fans and 3 floor fans and have to sleep on top of the sheets -- Original message from Janice jan...@centurytel.net: -- Kim, what do you have your thermostat set at in summer? We keep ours at 71 degrees and I have ceiling fans in every room. I really seem to need to have to have air movement as much as cool air.Janice - Original Message - From: kimr1...@bellsouth.net To: bradebi ; transverse myelitis ; Janice Sent: Friday, June 12, 2009 9:32 PM Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
I would be more like you in temperatures but were I live there isn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm.. and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say. Debi From: Janice Date: 6/14/2009 8:31:46 PM To: bradebi; transverse myelitis; kimr1...@bellsouth.net Subject: Re: [TMIC] You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer, we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around 65 during the day and 60 at nite.All our friends know to wear heavier clothing and grab an afghan when they come over. I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves. Janice - Original Message - From: bradebi To: transverse myelitis ; Janice ; kimr1...@bellsouth.net Sent: Friday, June 12, 2009 9:45 PM Subject: Re: [TMIC] Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC] Depends and Poise
I get my incontinent pads from a company called Shield Healthcare..and they deliver my diapers right to my door...I have have Medi-cal here in California pays for it...ask your doctor to call in the prescription..and that's it. Debi From: jharpe...@aol.com Date: 6/14/2009 8:34:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Depends and Poise My mother-in-law in an assisted living facility nearby uses Depends briefs and Poise pads. They do add up even at the discount store. Does anyone buy them in bulk somewhere or know of a place to get a good price on them? Thanks, Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips. Spiral_notebook.jpg
Re: [TMIC] Managing in winter
I have these rubber kleets that pull onto your snow boots they have metal spikes on the bottom..they are very good and well made...I haven't even got close to slipping with them. Also my wheel chair is all terrain I am really impressed with it..I can go threw dirt grass and snow...deep sand doesn't work well in any chair I guess, but I was able to use my chair like a walker and I got down to the water...Oh I live in Lake Tahoe California..and we get a lot of snow too...I generally feel better in winter..as long as I don't get cold..and if I get bone chilling cold it could take days to warm up again..very painful. Debi From: jharpe...@aol.com Date: 6/14/2009 8:40:41 PM To: tmic-list@eskimo.com Subject: [TMIC] Managing in winter This may seem like an odd question here at the beginning of the summer, but my husband and I were talking about job situations and long-term possibilities and the like, and he made the comment that he never considered moving up North where there was a lot of snow because of my situation. It's true that when we do have snow and ice, which isn't too often here in SC, I pretty much am confined inside. I walk without a cane or walker, but my balance and footing aren't sure enough that I could walk where it is slippery. Though I love him for taking that into account, I hate that he is limited in that way. How DO some of you manage in wintry weather? Does just sprinkling rock salt on your driveway or front step help, or are there other things you do to cope, or do you just stay inside when it's slippery out? Barbara H. http://barbarah.wordpress.com/ Download the AOL Classifieds Toolbar for local deals at your fingertips. Spiral_notebook.jpg
Re: [TMIC]
Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC] leg and foot comfort in bed
I miss jeans (Levi's) the most...I have worn Jeans and a t-shirt all my life .I cant wear shoes or socks or stand sheets or blankets on me, and if my Husband rubs my back by going up my spine then it puts me in a spasm that is very painful..I hate it..but I don't want my Husband to stop touching me. Debi T4 Spastic paraplegic South Lake Tahoe, Ca. ---Original Message--- From: jrushton Date: 4/15/2009 8:49:19 AM To: balmat...@aol.com; tmic Subject: Re: [TMIC] leg and foot comfort in bed One thing I did find is that I sure can't wear jeans anymore because the denim causes immediate pain and leads to painful spasms. There are a few other fabrics that do the same thing. The safest is lightweight cotton knit Jeanne ---Original Message--- From: balmat...@aol.com Date: 04/15/09 00:23:53 To: tmic-list@eskimo.com Subject: [TMIC] leg and foot comfort in bed I think that this is something that most of us suffer from at some point during our TM lives, skin sensitivity against fabric, and it's the worst when we are trying to get some much needed sleep. I have purchased so many sets of sheets and blankets over my TM years (T 8-10, 6/1/99), and I have had this sensitivity for most of that time. It started as sensitivity and is so often PAIN. I've gone from egyptian cotton very good quality flannel, jersey (like T-shirt material) and all sorts of thread counts of cotton. In sheets, I think that most of the time, my most comfortable sheet happens to be the jersey. I'm not saying that I can always have my legs against them, because I cannot, I lay on my back many nights with my knees bent so nothing touches my legs. Blankets are much worse, so you need to get the most comfortable sheet you can near your skin. If you have any old pajama bottoms, those are also some of the most comfortable, or I wear the short ones. I've bought some microfiber plush pants this year from OldNavy.com and they have been warm on my legs and haven't irritated them. I am very much looking forward to warmer weather when I can wear short pants all the time and not being uncomfortable. Hugs to all, Barbara A in CA Great deals on Dell s most popular laptops Starting at $479
Re: [TMIC] Thank GOD Fay is out of Florida RE: Candis
The weather does affect me to..I get feelings that there will be rain..and I spasm like every 20 or so seconds.. And my legs feel like there tight and stiff..but when it gets muggy like the rain is going to start..that is when the spas starts like in slow motion and goes up my legs..not down..right now I am battling the heat burn on most of my body..then if I have a fan running and the air hits my legs it give me a burning feeling..I think our skin is very sensitive to everything..even clothes hurt sometimes. Debi W T4 incomplete Spastic paraplegic ---Original Message--- From: CANDIS KALLEY Date: 8/25/2008 11:02:06 AM To: tmic-list Subject: [TMIC] Thank GOD Fay is out of Florida I am so grateful to have TS Fay out of FL. I have great sensative to barometric pressure changes. The rain bans have caused me such pain this past week, especially in the lower back almost to the point of not being able to move. Also, the spasms in my legs have increased. No meds (hydroco and/or Tylnal Xstrength), warm baths, nor TENS has helped. Now we have another storm forming almost in the same area conditions as Fay. Does anyone else have problems with the barometric pressure changes? If so, can you suggest anything? I have an appointment with my neuro Wed. and I'm hoping someone, or something, can give me an answer. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. Spiral_notebook.jpg
Re: [TMIC] Questions
1) Did you ever have chicken pox? Yes as a child 2) Did you ever suffer from shingles? No 3) Did you have a flare-up of shingles prior to TM No
Re: [TMIC] OT Ken
Ken please know that you and your family are in my prayers for strength to get threw this..I know how hard it is to let a love one go on to a better place. Debi Wall South Lake Tahoe California
Re: [TMIC] age at incident
I was in my early 20's when I was stricken I am 49 now..so I guess I have MS to look forward to hua? Debi T4 incomplete spastic paraplegic ---Original Message--- From: Diane Date: 6/5/2008 7:24:01 AM To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] age at incident So young. I was 58. I was dx'd with definitive ATM and 'possible' MS. My neuro said that statistically, the later in life you develop neurological disease, the lower your chances of developing full blown MS. I was never sure if he was trying to raise my morale or if he did have those statistics. Whatever the reason, it helped a lot with the initial shock of having to live life differently. Besides, the sun is shining. Diane in Canada - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, June 05, 2008 9:50 AM Subject: Re: [TMIC] age at incident I was 38. Barbara H. http://barbarah.wordpress.com/ In a message dated 6/5/2008 8:05:43 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: I was 62 when I was nailed eleven years ago. A tiny infarction in the spinal cord at T9-10 dropped me in minutes. Barbara Alma said, I believe, that she was 48. Alton Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food. notbook_tile1.gifgardening2.gif
RE: [TMIC] QUESTION
I was told the reason I don't get sick is because of the immune system is way high...I haven't been sick but twice in my life. Debi Wall T4 incomplete Spastic Paraplegic ---Original Message--- From: jrushton Date: 4/2/2008 10:50:00 AM To: Robert Pall; tmic-list@eskimo.com Subject: RE: [TMIC] QUESTION Me, too!! It seems my immune system is stronger and each time the flu or colds go around I might seem to 'start' it but my body seems to fight it off! I have been really healthy as far as flu and colds! I was just thinking of that very thing during the flu and cold season last Fall! Good point to ponder! Jeanne ---Original Message--- From: Robert Pall Date: 4/2/2008 12:34:19 PM To: jrushton Subject: RE: [TMIC] QUESTION Jeanne: It is strange...at least for me it seems I have gotten ill less since TM ..go figure! Rob From: jrushton [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 11:23 AM To: Robert Pall; tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
