Re: [TMIC] Unidentified subject!
Okay – I am dealing with something else then.Wonder what causes this problem.Told my doc about it and he just said to stretch it out – which I do. Only lasts about a day or so at a time. Janice From: Robert Pall Sent: Wednesday, January 28, 2015 10:12 AM To: jannic...@gmail.com ; malugss...@me.com ; nmacleo...@yahoo.co.uk Cc: i.whidd...@icloud.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! Banding to me does not mean painit means tightness! Like a rubber band being pulled to its limit! The baclofen pump is used to reduce banding and spasticity. Rob in NJ -Original Message- From: Janice Nichols jannic...@gmail.com To: Dalton Garis malugss...@me.com; Nikki Macleod nmacleo...@yahoo.co.uk Cc: Iris Whiddett i.whidd...@icloud.com; tmic-list tmic-list@eskimo.com Sent: Wed, Jan 28, 2015 10:30 am Subject: Re: [TMIC] Unidentified subject! Okay, as long as we are talking about this, when you all talk about banding pain, is it like very sharp pain?Every few weeks I have severe sharp pain at the top of my rib cage where it is almost hard to breathe. Is that banding? Janice -Original Message- From: Dalton Garis Sent: Wednesday, January 28, 2015 7:03 AM To: Nikki Macleod Cc: Iris Whiddett ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! It is the same thing MS people get. They call it “the MS Hug”, and for them it can be an almost constant annoyance and discomfort, especially when trying to fall asleep. Dalton On Jan 26, 2015, at 3:04 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Hi Iris, I also hope it continues. Nikki, UK Sent from my iPhone On 26 Jan 2015, at 20:01, Iris Whiddett i.whidd...@icloud.com wrote: Well done Nikki for triggering this flurry of activity on TMIC. I hope it continues. Iris Sent from my iPad On 26 Jan 2015, at 07:56, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Hi, I also suffer from 'banding', the neurologist didn't speak about it but I learnt what it was from other people TM had hit. Nikki, UK Sent from my iPad On 26 Jan 2015, at 07:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
Okay, as long as we are talking about this, when you all talk about banding pain, is it like very sharp pain?Every few weeks I have severe sharp pain at the top of my rib cage where it is almost hard to breathe. Is that banding? Janice -Original Message- From: Dalton Garis Sent: Wednesday, January 28, 2015 7:03 AM To: Nikki Macleod Cc: Iris Whiddett ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! It is the same thing MS people get. They call it “the MS Hug”, and for them it can be an almost constant annoyance and discomfort, especially when trying to fall asleep. Dalton On Jan 26, 2015, at 3:04 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Hi Iris, I also hope it continues. Nikki, UK Sent from my iPhone On 26 Jan 2015, at 20:01, Iris Whiddett i.whidd...@icloud.com wrote: Well done Nikki for triggering this flurry of activity on TMIC. I hope it continues. Iris Sent from my iPad On 26 Jan 2015, at 07:56, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Hi, I also suffer from 'banding', the neurologist didn't speak about it but I learnt what it was from other people TM had hit. Nikki, UK Sent from my iPad On 26 Jan 2015, at 07:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
I have never really been bothered by banding - sometimes I can feel it, but really no problem. My worst problem is spondolosis/arthritis down low in my back that is aggravated by TM. Also, the never going down the backs of my calves. That can knock me to the floor when it hits. Otherwise, I'm pretty good. Janice -Original Message- From: Iris Whiddett Sent: Sunday, January 25, 2015 4:10 PM To: robthe...@aol.com Cc: tmic Subject: [TMIC] Unidentified subject! Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Hey everybody,
Glad to hear from you. Hope you keep us up with how you are doing and good luck trying to improve your situation. Janice From: Robert Pall Sent: Sunday, January 25, 2015 3:13 PM To: jannic...@gmail.com ; malugss...@gmail.com Cc: skle...@cox.net ; mic...@hotmail.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Hi everyone. It has been 17+ years for me and at the beginning you were my only support. As for me things have been lousy for almost 2 years (especially lousyit is always plain lousy) coincidentally this is the period I have had the Baclofen Pump. I am not saying that it has not helped my legs (banding) somewhathowever either the pump or the combo of it with m7y other meds have been making me feel lousy. I am lowering my dosage from the pump to see if that helps and if so I will have the pump removed and go on as I have for the previous 15 years. I am the support group leader for NJ and we try to get together 3 times a year. It is nice to see my old friends online again...I am either to old or to computer illiterate to use facebook. I am really glad the group here is getting together...I have missed it! Rob in NJ -Original Message- From: Janice Nichols jannic...@gmail.com To: Dalton Garis malugss...@gmail.com Cc: Susan Kleinz skle...@cox.net; amy shultz mic...@hotmail.com; Tmic tmic-list@eskimo.com Sent: Sun, Jan 25, 2015 3:21 pm Subject: Re: [TMIC] Hey everybody, Dalton, maybe TM later on in life? Janice From: Dalton Garis Sent: Friday, January 23, 2015 1:51 PM To: Janice Nichols Cc: Susan Kleinz ; amy shultz ; Tmic Subject: Re: [TMIC] Hey everybody, Incredible story! I still remember Love Canal and all that. Behind our house and across the street was the rail yard and a great big pile of coal that was used for the trains, but I used it for play. It was great fun climbing up to the top of the pile then jump off as far as I could go, hit near the bottom of the pile and slide around in that slippery coal. My mother would throw me in the bath and there would be a black ring around it about 8” deep. Trouble is, that there is a lot of mercury in coal, which we also used to heat our home. We had a large room in the cellar with a window for trucks to send coal into it down a chute. I think all that play in the coal especially exposed me to too much mercury, and that it gave me all sorts of problems growing up, including reading difficulties, concentration, sleep, growth difficulties maybe, and now TM. d. Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 23, 2015, at 14:03, Janice Nichols jannic...@gmail.com wrote: WOW!!What a story. So glad you are doing so much better, but how long will you need to keep taking the treatments?Surely you are about through. So sorry you have had to go through this, but you were so smart to come up with this testing. Keep up with the good improvement. Janice From: Susan Kleinz Sent: Friday, January 23, 2015 9:30 AM To: Janice Nichols Cc: amy shultz ; Tmic Subject: Re: [TMIC] Hey everybody, Hello ™ friends: This is Susan Kleinz, Phx, AZ. This group was extremely important to me 5 years ago when I relapsed and spent my time in bed or the lazy boy outside (tacky, I know). After trying everything I could find to help me get better (acupuncture, prolotherapy, PRP therapy, cranial facial, myofacial pt therapy…) I decided to have a food allergy test and toxic heavy metals test. I was only allergic to bananas, yogurt and whey. No big deal. However my heavy metals test showed me in dangerous levels of lead, mercury, cadmium, gadolinium(from MRI'S) After my first set of chelation, which is an IV solution that pulls the metals from your body, I felt bizarre results. I could do so much more! I can walk so much better, no longer in bed, worked for 7 months straight in my father's store, and basically feel like I have so much of my life back. I am now on my 31st treatment. Most people only needs 6. I have a heavy body burden of toxic metals. Our family home was built on the Motorola dumping ground. 20 years of toxic wastes dumped into the ground and into our water. Our whole neighborhood is sick with cancer, immune issues, ms…etc.) It is expensive to do this treatment… $155 per. My husband has wiped out our savings to help me get better. I feel that the reason I contracted ™ is because of this poisoning. I used to lay in bed and feel I was being poisoned. Every day I felt like this. I even dreamed that my husband was poisoning me… I passed these metals on to two of my three children who were able to detox with 6 treatments only. This treatment may be available soon under insurance, but mine does not cover NMD -Naturepaths (sp?). I even feel and look more like myself! I am always thinking about all of you. Susan On Jan 22, 2015, at 6:11 PM, Janice Nichols jannic...@gmail.com wrote
Re: [TMIC] Hey everybody,
Dalton, maybe TM later on in life? Janice From: Dalton Garis Sent: Friday, January 23, 2015 1:51 PM To: Janice Nichols Cc: Susan Kleinz ; amy shultz ; Tmic Subject: Re: [TMIC] Hey everybody, Incredible story! I still remember Love Canal and all that. Behind our house and across the street was the rail yard and a great big pile of coal that was used for the trains, but I used it for play. It was great fun climbing up to the top of the pile then jump off as far as I could go, hit near the bottom of the pile and slide around in that slippery coal. My mother would throw me in the bath and there would be a black ring around it about 8” deep. Trouble is, that there is a lot of mercury in coal, which we also used to heat our home. We had a large room in the cellar with a window for trucks to send coal into it down a chute. I think all that play in the coal especially exposed me to too much mercury, and that it gave me all sorts of problems growing up, including reading difficulties, concentration, sleep, growth difficulties maybe, and now TM. d. Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 23, 2015, at 14:03, Janice Nichols jannic...@gmail.com wrote: WOW!!What a story. So glad you are doing so much better, but how long will you need to keep taking the treatments?Surely you are about through. So sorry you have had to go through this, but you were so smart to come up with this testing. Keep up with the good improvement. Janice From: Susan Kleinz Sent: Friday, January 23, 2015 9:30 AM To: Janice Nichols Cc: amy shultz ; Tmic Subject: Re: [TMIC] Hey everybody, Hello ™ friends: This is Susan Kleinz, Phx, AZ. This group was extremely important to me 5 years ago when I relapsed and spent my time in bed or the lazy boy outside (tacky, I know). After trying everything I could find to help me get better (acupuncture, prolotherapy, PRP therapy, cranial facial, myofacial pt therapy…) I decided to have a food allergy test and toxic heavy metals test. I was only allergic to bananas, yogurt and whey. No big deal. However my heavy metals test showed me in dangerous levels of lead, mercury, cadmium, gadolinium(from MRI'S) After my first set of chelation, which is an IV solution that pulls the metals from your body, I felt bizarre results. I could do so much more! I can walk so much better, no longer in bed, worked for 7 months straight in my father's store, and basically feel like I have so much of my life back. I am now on my 31st treatment. Most people only needs 6. I have a heavy body burden of toxic metals. Our family home was built on the Motorola dumping ground. 20 years of toxic wastes dumped into the ground and into our water. Our whole neighborhood is sick with cancer, immune issues, ms…etc.) It is expensive to do this treatment… $155 per. My husband has wiped out our savings to help me get better. I feel that the reason I contracted ™ is because of this poisoning. I used to lay in bed and feel I was being poisoned. Every day I felt like this. I even dreamed that my husband was poisoning me… I passed these metals on to two of my three children who were able to detox with 6 treatments only. This treatment may be available soon under insurance, but mine does not cover NMD -Naturepaths (sp?). I even feel and look more like myself! I am always thinking about all of you. Susan On Jan 22, 2015, at 6:11 PM, Janice Nichols jannic...@gmail.com wrote: Amy Glad to hear you are doing much better. Is what you had similar to what I had in the hospital where I had a UTI infection, but, of course, I didn’t feel it. Then it went systemic and I nearly died too.No fun. Janice From: amy shultz Sent: Thursday, January 22, 2015 5:34 AM To: Tmic Subject: Fwd: [TMIC] Hey everybody, I am here and on FB too. Does anyone know how Jude Hoops Is? I haven't seen her anywhere. Or heard from her. This is Amy Shultz. I had a really bad summer up till Oct 31st when I almost died. The doctors said my body took a big hit. I had severe sepsis and septic shock. Since my hair is falling out really bad and nails are splitting and peeling and breaking. Real fragile. I even take 6000mcg of Biotin a day and have for a couple years. So IDK what's going on. Amy Shultz Ohio Sent from my Verizon Wireless 4G LTE smartphone Original message From: suerdlagpu...@gmail.com Date:01/21/2015 9:47 AM (GMT-05:00) To: Pat p...@voorheissigns.com, Susan Kleinz skle...@cox.net Cc: malugss...@gmail.com, Janice Nichols jannic...@gmail.com, Nikki Macleod nmacleo...@yahoo.co.uk, tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Good story. Very instructive. Thanks Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Pat Sent: Wednesday, January 21
[TMIC] Group
It was really good hearing from all of you in the TM group.Lets try to keep in touch. Janice
Re: [TMIC] Hey everybody,
WOW!!What a story. So glad you are doing so much better, but how long will you need to keep taking the treatments?Surely you are about through. So sorry you have had to go through this, but you were so smart to come up with this testing. Keep up with the good improvement. Janice From: Susan Kleinz Sent: Friday, January 23, 2015 9:30 AM To: Janice Nichols Cc: amy shultz ; Tmic Subject: Re: [TMIC] Hey everybody, Hello ™ friends: This is Susan Kleinz, Phx, AZ. This group was extremely important to me 5 years ago when I relapsed and spent my time in bed or the lazy boy outside (tacky, I know). After trying everything I could find to help me get better (acupuncture, prolotherapy, PRP therapy, cranial facial, myofacial pt therapy…) I decided to have a food allergy test and toxic heavy metals test. I was only allergic to bananas, yogurt and whey. No big deal. However my heavy metals test showed me in dangerous levels of lead, mercury, cadmium, gadolinium(from MRI'S) After my first set of chelation, which is an IV solution that pulls the metals from your body, I felt bizarre results. I could do so much more! I can walk so much better, no longer in bed, worked for 7 months straight in my father's store, and basically feel like I have so much of my life back. I am now on my 31st treatment. Most people only needs 6. I have a heavy body burden of toxic metals. Our family home was built on the Motorola dumping ground. 20 years of toxic wastes dumped into the ground and into our water. Our whole neighborhood is sick with cancer, immune issues, ms…etc.) It is expensive to do this treatment… $155 per. My husband has wiped out our savings to help me get better. I feel that the reason I contracted ™ is because of this poisoning. I used to lay in bed and feel I was being poisoned. Every day I felt like this. I even dreamed that my husband was poisoning me… I passed these metals on to two of my three children who were able to detox with 6 treatments only. This treatment may be available soon under insurance, but mine does not cover NMD -Naturepaths (sp?). I even feel and look more like myself! I am always thinking about all of you. Susan On Jan 22, 2015, at 6:11 PM, Janice Nichols jannic...@gmail.com wrote: Amy Glad to hear you are doing much better. Is what you had similar to what I had in the hospital where I had a UTI infection, but, of course, I didn’t feel it. Then it went systemic and I nearly died too.No fun. Janice From: amy shultz Sent: Thursday, January 22, 2015 5:34 AM To: Tmic Subject: Fwd: [TMIC] Hey everybody, I am here and on FB too. Does anyone know how Jude Hoops Is? I haven't seen her anywhere. Or heard from her. This is Amy Shultz. I had a really bad summer up till Oct 31st when I almost died. The doctors said my body took a big hit. I had severe sepsis and septic shock. Since my hair is falling out really bad and nails are splitting and peeling and breaking. Real fragile. I even take 6000mcg of Biotin a day and have for a couple years. So IDK what's going on. Amy Shultz Ohio Sent from my Verizon Wireless 4G LTE smartphone Original message From: suerdlagpu...@gmail.com Date:01/21/2015 9:47 AM (GMT-05:00) To: Pat p...@voorheissigns.com, Susan Kleinz skle...@cox.net Cc: malugss...@gmail.com, Janice Nichols jannic...@gmail.com, Nikki Macleod nmacleo...@yahoo.co.uk, tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Good story. Very instructive. Thanks Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Pat Sent: Wednesday, January 21, 2015 9:23 AM To: Susan Kleinz Cc: malugss...@gmail.com; Janice Nichols; Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, I'm here and on Face Book. I haven't had any changes in my TM, but I do have an interesting story about a suspected relapse. In December, 2013, I thought I had a TM relapse or a stroke and went to ER walking and talking as if I was in a drunken stupor. CT, MRI's, and Labs showed nothing new had happened and I recovered fine. My doctors and I were stumped. In December 2014, I woke up one morning feeling my TM normal with the start of a cold. I went thru my routine of meds, reading, and coffee. I had difficulty standing up, my walking was bad and felt drunk when I started for another cup of coffee. I again wondered if I was having a TM relapse. I sat and compared the two relapses. I didn't want to go thru another 36 hour observation in ER. I felt and walked and talked as if drunk both times. I had the start of a cold both times. I had taken cough syrup both times, but the bottle was almost empty so it couldn't be that. I didn't have a relapse at all. I had a reaction to taking a full dose of cough syrup with Dextromethorphan and my TM meds Lyrica and Baclofen - on an empty stomach. What
Re: Fwd: [TMIC] Hey everybody,
Amy Glad to hear you are doing much better. Is what you had similar to what I had in the hospital where I had a UTI infection, but, of course, I didn’t feel it. Then it went systemic and I nearly died too.No fun. Janice From: amy shultz Sent: Thursday, January 22, 2015 5:34 AM To: Tmic Subject: Fwd: [TMIC] Hey everybody, I am here and on FB too. Does anyone know how Jude Hoops Is? I haven't seen her anywhere. Or heard from her. This is Amy Shultz. I had a really bad summer up till Oct 31st when I almost died. The doctors said my body took a big hit. I had severe sepsis and septic shock. Since my hair is falling out really bad and nails are splitting and peeling and breaking. Real fragile. I even take 6000mcg of Biotin a day and have for a couple years. So IDK what's going on. Amy Shultz Ohio Sent from my Verizon Wireless 4G LTE smartphone Original message From: suerdlagpu...@gmail.com Date:01/21/2015 9:47 AM (GMT-05:00) To: Pat p...@voorheissigns.com, Susan Kleinz skle...@cox.net Cc: malugss...@gmail.com, Janice Nichols jannic...@gmail.com, Nikki Macleod nmacleo...@yahoo.co.uk, tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Good story. Very instructive. Thanks Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Pat Sent: Wednesday, January 21, 2015 9:23 AM To: Susan Kleinz Cc: malugss...@gmail.com; Janice Nichols; Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, I'm here and on Face Book. I haven't had any changes in my TM, but I do have an interesting story about a suspected relapse. In December, 2013, I thought I had a TM relapse or a stroke and went to ER walking and talking as if I was in a drunken stupor. CT, MRI's, and Labs showed nothing new had happened and I recovered fine. My doctors and I were stumped. In December 2014, I woke up one morning feeling my TM normal with the start of a cold. I went thru my routine of meds, reading, and coffee. I had difficulty standing up, my walking was bad and felt drunk when I started for another cup of coffee. I again wondered if I was having a TM relapse. I sat and compared the two relapses. I didn't want to go thru another 36 hour observation in ER. I felt and walked and talked as if drunk both times. I had the start of a cold both times. I had taken cough syrup both times, but the bottle was almost empty so it couldn't be that. I didn't have a relapse at all. I had a reaction to taking a full dose of cough syrup with Dextromethorphan and my TM meds Lyrica and Baclofen - on an empty stomach. What a relief! I saw my PCP yesterday for my RX renewals and I think she was as relieved as I was. That means no TM relapses in 11 years. Praise the Lord! Patti - Michigan. On Jan 18, 2015, at 1:12 PM, Susan Kleinz skle...@cox.net wrote: Me too. On a trip but will be responding. ! So glad someone is still out there in our tm group Sent from my iPhone On Jan 17, 2015, at 10:41 AM, malugss...@gmail.com wrote: I'm still here also. Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Janice Nichols Sent: Saturday, January 17, 2015 12:33 PM To: Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Hi Nikki, I remember you! The old group has pretty well disbanded and gone to Facebook , etc. I have had TM for 8 years and there is always something improving. You have to work hard at it and keep moving, but it really pays off. Once in a while the bladder even improves for a hile - and then to the usual, but I will take what I can get. I really wish doctor's would not give a time limit on improvement - we all go at different paces with different problems to deal with. You sound great and I am really proud of all your accomplishments. It couldn't have been easy for you. Keep in touch. Janice Missouri -Original Message- From: Nikki Macleod Sent: Saturday, January 17, 2015 6:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins
Re: [TMIC] Hey everybody,
Patti - you really had an eye opener!Sometimes it only takes 1 unsuspected drug to do the trick.I have had similar feelings - just chalk it up to good old TM!!! Janice -Original Message- From: Pat Sent: Wednesday, January 21, 2015 8:23 AM To: Susan Kleinz Cc: malugss...@gmail.com ; Janice Nichols ; Nikki Macleod ; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, I'm here and on Face Book. I haven't had any changes in my TM, but I do have an interesting story about a suspected relapse. In December, 2013, I thought I had a TM relapse or a stroke and went to ER walking and talking as if I was in a drunken stupor. CT, MRI's, and Labs showed nothing new had happened and I recovered fine. My doctors and I were stumped. In December 2014, I woke up one morning feeling my TM normal with the start of a cold. I went thru my routine of meds, reading, and coffee. I had difficulty standing up, my walking was bad and felt drunk when I started for another cup of coffee. I again wondered if I was having a TM relapse. I sat and compared the two relapses. I didn't want to go thru another 36 hour observation in ER. I felt and walked and talked as if drunk both times. I had the start of a cold both times. I had taken cough syrup both times, but the bottle was almost empty so it couldn't be that. I didn't have a relapse at all. I had a reaction to taking a full dose of cough syrup with Dextromethorphan and my TM meds Lyrica and Baclofen - on an empty stomach. What a relief! I saw my PCP yesterday for my RX renewals and I think she was as relieved as I was. That means no TM relapses in 11 years. Praise the Lord! Patti - Michigan. On Jan 18, 2015, at 1:12 PM, Susan Kleinz skle...@cox.net wrote: Me too. On a trip but will be responding. ! So glad someone is still out there in our tm group Sent from my iPhone On Jan 17, 2015, at 10:41 AM, malugss...@gmail.com wrote: I'm still here also. Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Janice Nichols Sent: Saturday, January 17, 2015 12:33 PM To: Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Hi Nikki, I remember you! The old group has pretty well disbanded and gone to Facebook , etc. I have had TM for 8 years and there is always something improving. You have to work hard at it and keep moving, but it really pays off. Once in a while the bladder even improves for a hile - and then to the usual, but I will take what I can get. I really wish doctor's would not give a time limit on improvement - we all go at different paces with different problems to deal with. You sound great and I am really proud of all your accomplishments. It couldn't have been easy for you. Keep in touch. Janice Missouri -Original Message- From: Nikki Macleod Sent: Saturday, January 17, 2015 6:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins and needles. I figured this is a good thing considering it is numb until I get these episodes. I've also had episodes of feeling as though the soles of feet are burning like they are on fire. TM struck me on 15/02/2011. Doctors told me after a certain period of time that would be the end of the improvement. I believe that you may continue to improve way after that (I have). Has anyone else experienced anything like this? Nikki, Durham, UK. Sent from my iPad
Re: [TMIC] Hey everybody,
Hi Nikki, I remember you! The old group has pretty well disbanded and gone to Facebook , etc.I have had TM for 8 years and there is always something improving. You have to work hard at it and keep moving, but it really pays off. Once in a while the bladder even improves for a hile - and then to the usual, but I will take what I can get.I really wish doctor's would not give a time limit on improvement - we all go at different paces with different problems to deal with. You sound great and I am really proud of all your accomplishments.It couldn't have been easy for you. Keep in touch. Janice Missouri -Original Message- From: Nikki Macleod Sent: Saturday, January 17, 2015 6:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins and needles. I figured this is a good thing considering it is numb until I get these episodes. I've also had episodes of feeling as though the soles of feet are burning like they are on fire. TM struck me on 15/02/2011. Doctors told me after a certain period of time that would be the end of the improvement. I believe that you may continue to improve way after that (I have). Has anyone else experienced anything like this? Nikki, Durham, UK. Sent from my iPad
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
You are not alone here. I am still here, but it sure is quiet! Hope you are doing well. Janice – from Missouri From: James Berg Sent: Wednesday, March 12, 2014 1:52 AM To: tmic-l...@eskimo.net Subject: [TMIC] Meiling Caperton, Kanohe, Hawaii Meiling, if you are still in Hawaii, please give me a holler--I thought I was alone here. JimwlEmoticon-smile[1].png
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
Dalton - not offended!! So glad you are doing so well.Isn’t it strange the things we discover ourselves that help us?Doctors can still be so clueless about some things - on the other hand, they can save our lives! Janice From: Dalton Garis Sent: Wednesday, March 12, 2014 11:26 AM To: Linda Egli ; tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Say, Folks! Nice to hear a voice crying in the wilderness. I am still here, also. By the way, someone hacked my Facebook so had to change my name, to Abdu’l-Hanif Al-Shukri – let them try to hack that one! So, if you remember me, for instance Meiling, and you want to “friend me, I’m still out there. Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of trying. Can’t go below that amount, discovering that is what is actually required to cover most of the pain. My memory is better and am less anxious about losing my mind to fog and dopiness. And went 28 days without a seizure, the longest time since getting the first one in 22 April 2010. Want to know what reduced their frequency? - not taking all those vitamin supplements anymore. It seems the minerals in them were interfering in some way with the nerves, especially magnesium. Visiting my mother in Massachusetts – she’s 97 – I forgot to bring any and went without for a week. Returning home I realized that I hadn’t had any seizures, and guessed that the only change was in not taking all those vitamin supplements. So I stopped, and sure enough, the seizures became very infrequent. Who knew? Now is the Baha’i month of the Fast, when Baha’is go without food and drink during the hours when the sun is in the sky, for 19 days, the last month of our year. (In our calendar there are 19 months of 19 days, with 4 or 5 inter calendar days just before the month of the Fast). We eat and drink after sunset or before sunrise but not during the hours of sunlight. Smoking is also prohibited, as it is considered a form of drink. The sick, the traveling, those nursing or pregnant, or under the age of 15 or older than 70 are not bound by the Fast; neither are those engaged in heavy labor. It is for those in good health, but others are not bound to it. While not bound by the Fast I am going without food during the hours of fasting but drinking tea or coffee or water whenever I feel the need. It is going OK, and does change the relationship to the material world and increase nearness to God. I am grateful to participate at even this level. I hope it doesn’t upset anyone if I talk openly about God. It seems our America is conspiring to wipe any mention of Him from any public discourse – a kind of propaganda in its own right if you think about it. I apologize, though, if anyone here is offended. Love and prayers, Dalton Abdu’l-Hanif Al-Shukri Dalton Garis Flushing, Queens New York, USA From: Linda Egli le...@sbcglobal.net Reply-To: Linda Egli le...@sbcglobal.net Date: Wed, 12 Mar 2014 07:45:18 -0700 (PDT) To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 12 Mar 2014 07:45:20 -0700 (PDT) Another TMer still here too. I miss the people that used to use this site. Stay well. Linda - Texas -- From: Janice Nichols jannic...@gmail.com To: James Berg molokai...@gmail.com; tmic-l...@eskimo.net Sent: Wednesday, March 12, 2014 9:39 AM Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii You are not alone here. I am still here, but it sure is quiet! Hope you are doing well. Janice – from Missouri From: James Berg Sent: Wednesday, March 12, 2014 1:52 AM To: tmic-l...@eskimo.net Subject: [TMIC] Meiling Caperton, Kanohe, Hawaii Meiling, if you are still in Hawaii, please give me a holler--I thought I was alone here. Jim wlEmoticon-smile[1].png
Re: [TMIC]
So sorry to hear of his passing. May God help you through this - I am sure you have been through so much. Janice -Original Message- From: wrabal...@gt.rr.com Sent: Wednesday, March 12, 2014 3:57 PM To: tmic-list@eskimo.com Subject: [TMIC] I just realized I had not seen much activity. I am not sure this is going to the group, I hope so. Some of you were probably friends with Dennis Rabalais. He passed away on Jan. 29, 2014. He had been sick for so many years, I know he is in a better place. But as a mother I surely do miss him. Today for no reason I have cried all day. I feel like my heart is broken and it is painful. I thank all of you that talked to Dennis for being his friend. I will try to keep an eye out for any of your post. Bless all of you, Rebecca Rabalais
Re: [TMIC] End of birthday lists
I also will always keep this website and I check it a couple of times a day. I love this bunch and feel there are still quite a few “listening in”.Any messages sent get read. We have hit a “quiet” time, but sparks may get flying again.I will always feel a part of this great group and won’t give up on us. Janice From: Linda Egli Sent: Friday, January 03, 2014 8:45 AM To: Dalton Cc: tmic-list@eskimo.com Subject: Re: [TMIC] End of birthday lists I agree with you Dalton. I always check for posting from this site. I also do not trust Facebook. I have too many concern about privacy hacking to use the site. Maybe talk here will increase sometime. Linda E. From: Dalton malugss...@gmail.com To: amy shultz mic...@hotmail.com; Pat p...@voorheissigns.com; TM group tmic-list@eskimo.com Sent: Friday, January 3, 2014 6:07 AM Subject: RE: [TMIC] End of birthday lists You've done a great job, Barbara; Actually, the quietude here goes through stages. As for Facebook, or Faceplant, as I have recently come to call it, it is unsafe and prone to being hacked, as mine was, which led to my taking my accound and pages down. Possibly, after a few more hacking scandles, more will apprexiate the more secure email communication. Dalton PS: I went over to tea from coffee and now avoid magnesium, and the seizures are far less. D. Butbas we get older I pay less attention to birthdays. Original message From: amy shultz mic...@hotmail.com Date: 01/03/2014 03:16 (GMT-05:00) To: Pat p...@voorheissigns.com,TM group tmic-list@eskimo.com Subject: RE: [TMIC] End of birthday lists I completely understand Barbara. It seems this has gotten very very quite here. Although I am feeling more and more of an alien amongst the other TM groups this one has been okay. I appreciate ALL you have done to keep them coming. Hopefully 2014 will be a bigger and brighter AND healthier year for us all. I am struggling day in and day out each and every day and am really run down!! I hope EVERYONE of you has a VERY Happy New Year and that all your dreams come true!! I will remain here for any messages but do offer my best to each and everyone of you!!! Amy SHultz Columbus Ohio CC: tmic-list@eskimo.com From: p...@voorheissigns.com Subject: Re: [TMIC] End of birthday lists Date: Tue, 31 Dec 2013 15:03:09 -0500 To: barbara...@gmail.com Thanks Barbara. You are correct in all your reasons. I'm still here on TMIC as well as on FBk and that's where I try to remember to send birthday greetings. Patti - Michigan On Dec 31, 2013, at 8:46 AM, Barbara H. barbara...@gmail.com wrote: Hello all, Some of you may remember how the birthday lists started many years ago. Someone found an online site that would send e-cards to others as a support for a charity, so many of us sent in our names and birthdays so as to use the site to raise funds for the TMA. Not surprisingly, the site died after a while. A girl on the TMIC named Carrie and I had accumulated the birthday names and lists, and after she left the list, I continued to send them out once a month. I've decided to stop doing so, for a number of reasons. 1) Not many people are here any more. Many are on Facebook and it is easy to send birthday greetings there. 2) I don't think many (if any) people use the birthday list to send individual greetings to anyone on it. (A few of you have faithfully sent happy birthdays on TMIC to those celebrating each month as a whole, and I have appreciated that.) 3) Since all mail that goes through the TMIC is archived online, I have wondered if it is a problem to have lists of names and e-mails there, if that increases anyone's spam content. 4) I have been sending out individual birthday greetings to everyone on the list, and more and more of them are returned to me because the address is no longer active. 5) For those who are no longer on the TMIC, I don't know if they welcome the birthday greetings or if they don't want me to bug them any more. So for all of those reasons, plus the amount of time involved, I have decided to stop sending the birthday lists out each month. I've just finished updating it with the latest information I have - if anyone else wants to take it over, I'll be happy to send you the list. I'm still here on the TMIC and plan to continue to be. I wish all of you a very happy and healthy 2014. Love, Barbara H.
Re: [TMIC] End of birthday lists
Barbara, Thank you for all the work you went to to supply the birthday list. I fully understand why you are not continuing with it.I also will always have this website open to whatever comes up. Maybe we have all said pretty much how we feel – physically, mentally, and emotionally – on the site. Anyway, thank you and I will catch any messages that come on this website. Janice From: Barbara H. Sent: Tuesday, December 31, 2013 7:46 AM To: tmic Subject: [TMIC] End of birthday lists Hello all, Some of you may remember how the birthday lists started many years ago. Someone found an online site that would send e-cards to others as a support for a charity, so many of us sent in our names and birthdays so as to use the site to raise funds for the TMA. Not surprisingly, the site died after a while. A girl on the TMIC named Carrie and I had accumulated the birthday names and lists, and after she left the list, I continued to send them out once a month. I've decided to stop doing so, for a number of reasons. 1) Not many people are here any more. Many are on Facebook and it is easy to send birthday greetings there. 2) I don't think many (if any) people use the birthday list to send individual greetings to anyone on it. (A few of you have faithfully sent happy birthdays on TMIC to those celebrating each month as a whole, and I have appreciated that.) 3) Since all mail that goes through the TMIC is archived online, I have wondered if it is a problem to have lists of names and e-mails there, if that increases anyone's spam content. 4) I have been sending out individual birthday greetings to everyone on the list, and more and more of them are returned to me because the address is no longer active. 5) For those who are no longer on the TMIC, I don't know if they welcome the birthday greetings or if they don't want me to bug them any more. So for all of those reasons, plus the amount of time involved, I have decided to stop sending the birthday lists out each month. I've just finished updating it with the latest information I have - if anyone else wants to take it over, I'll be happy to send you the list. I'm still here on the TMIC and plan to continue to be. I wish all of you a very happy and healthy 2014. Love, Barbara H.
Re: [TMIC] Deb's Medical and Work Status
Deb, Nothing like going through a little “hell”, is there?! So sorry you have been through so much, but, hopefully, you will come out of this facing each day much more comfortably. I am just so glad the medical people are coming through with all they have to find ways to make us have less pain.With me, it is my stimulator implant. I would not be walking nearly as much as I do without it.It fights pain and gives my legs more strength. As Patti said, it is such a good feeling to be able to say “I am getting back to where I can do fairly well for myself, hubby, and home.” Be patient, it will come. Most of us are pretty determined to get back as much as we can that TM/MS has taken away from us. Best of luck to you and don’t let it stop here. Keep letting us know how you are doing every step of the way. Janice From: Deb Monteleone Sent: Monday, November 04, 2013 11:35 AM To: tmic-l...@eskimo.net Subject: [TMIC] Deb's Medical and Work Status Hi all, Wanted you to know that I am no longer working. MS got the better of me after a long and tough battle. I just can’t do it anymore; the pain, fatigue, cognitive issues and quality of life won over. They made me say, I don’t care how the bills and health insurance will get paid; I just can’t do it. Those of you that really know me, realize how hard it is for me to say I can’t do something. I know the last update was a while ago but I figured I’d wait until I knew something fairly final. Here is an outline: - Shingles (on belly) decided to get in the action, only good thing is my Neurontin pain medication made it less painful. Although it still woke me up once or twice and threw some extra pain in during the day. I found it just soon enough (just past 72 hours) to take the medication for it so it didn’t get worse. - Had pain pump put in June 5th. - The Medication put in was the Prialt, snail venom, or as I like to call it escargot juice J. o This process took forever as they increase the amount very slowly. o Gave me allergic reaction to band aide adhesive. No more cuts for me J! o I had my first hallucination ever, content wasn’t scary but realizing I had it sitting at my desk, that scared me. o Had a psychotic episode with my Neurologists answering machine. Thank god that was on the day he turned it way down to remove the next day. - Next medication was baclofen which I was taking orally. We finally found the correct dosage. No more oral pills! - Now onto Morphine. It was late Friday October 4th (yes still working on getting pumps meds correct since June 5th J ) and I was finally hopefully going to get some pain relief from the 1st dosage of morphine. Well, after many pokes, x-ray and sonogram it turns out that the pump rolled over. The port for meds was facing inside me. Now tell me, how did I do that J? - How to get surgery in 12 days. o The surgeon’s assistant was great, by Tuesday I had a CAT scan, appt with surgeon Thursday, hospital pre-op Friday and surgery the next Wednesday. o In addition, that same busy week I had a brain MRI, brought in sample which ended up positive for UTI Friday before surgery. Started antibiotics, spoke with surgeon who said he could still operate as long as antibiotic had a few days to start working. Yes!! - Surgery on Oct 16th went well, combo of baclofen and morphine were put in. Maybe some relief in sight. o My on-call nurse ‘Mom’ took me for the surgery then cared for me at home, this was not her first nursing gig with me, it’s our quality time J. Thanks Mom for being such a good one. o Got home, needed cane to walk in house as my balance was completely off. Got better over the days. No one said this might happen, what the #%! o It did remove the very sharp tips of the pins and needles of which I am grateful for. o My goal is to be able to wear socks and not have my pants hurt either. - Even with the tips of the needles gone I just couldn’t take anymore, my body and brain had given their all. I had been looking into disability for a few weeks, after speaking with benefits at work it was decided Tuesday morning, finalized Wednesday that Thursday would be my last day. I do things quickJ, it was nice to have all 60+ employees together to say my good byes to. o They helped pack up my desk with a cart and two trips to my van. o My feelings about this part have not settled yet but I know in my heart it is what I need to do. It’s time to concentrate on my health. - After leaving work, it was off to the Doctor to increase the morphine a touch. Can’t yet tell if it worked since I am still paying for way over doing it packing my desk and saying goodbye. Then Friday night carried my scooter battery upstairs to charge it for a seminar the next day, it was 1:00 am and all in the house were sound asleep, how bad
Re: [TMIC] Re: Getting a flu shot
I have never had a reaction from the flu shot – although my doc told me to not get one until the 3rd year of TM.Hope you get back to “normal” soon and thanks for reporting in about the shot. Janice From: Dalton Garis Sent: Saturday, October 05, 2013 8:25 AM To: Janice Nichols ; Linda Egli ; heyjude48...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: Getting a flu shot Fellow suffers; I can now report on getting a flu shot. So far, it is not good. It is the fifth day and the base pain level, the level of pain experienced all the time without any additional loads, has increased to the extent that even the Lyrica is no longer able to contain it. My body is in a constant state of nerve pain and physical anxiety. I have increased the dosage of both Lyrica and Gabapentin. Hopefully, this is not a new normal; but if it is, then I have made a big mistake in getting a flu shot. Thus, unless you expect to be circulating around many people, and many new people with whom you have not previously spent much time, then, I don't recommend it. But living in New York City and taking the subway and other forms of public transportation, and having to use hand-holds all over the City, I thought it prudent to get the flu shot. It may still be the right move, but at this reckoning has come at a high cost, that of being in a distracting level of pain all the time now, just as I was during the early days of the disease. Dalton Dalton Garis Flushing, Queens New York, USA
Re: [TMIC] Fwd: Michigan walk, run, roll
No, I am sorry to say.I will not be going. Janice From: Pat Sent: Wednesday, October 02, 2013 6:14 AM To: tmic Subject: [TMIC] Fwd: Michigan walk, run, roll Begin forwarded message: From: Pat p...@voorheissigns.com Date: October 2, 2013, 7:09:59 AM EDT To: tmic tmic-list@eskimo.com Subject: Michigan walk, run, roll Is anyone on the TMIC going to the Holland, Michigan Saturday for the walk-a-thon? My husband and I are planning to go, but might not participate in the actual walk. Patti - Montrose, MI
Re: [TMIC] Unidentified subject!
Iris, What a scare! Did you ever find out what you did to your back?Glad you are doing much better now.I know how you feel about trying to get into a bigger car. We had to do that too after TM struck to make room for wheel chair, walker, etc.It really is hard to get in if you are short and, I cannot boost since TM, so it makes it harder.I am assuming none of us can boost any more. What about it? Can any of you still boost? I wish you continued improvement with your back and whatever you did to it to hurt it - don't do it again. Janice -Original Message- From: I.WHIDDETT Sent: Saturday, September 28, 2013 10:20 AM To: tmic-list@eskimo.com Subject: [TMIC] Unidentified subject! Dear Friends While things are so quiet, thought I would share with you the awful fright I suffered this week. I was aware of some discomfort in my back on Monday last, which quite quickly progressed to excruciating pain and difficulty even moving. I feared TM had taken another hit at me, this time further down my spine. Flat on my back, fearing the worst, it dawned on me that I could move my legs quite freely while prone and therefore could NOT be the b*d TM! The relief!! Total rest and anti-inflammatory medication have now seen a big improvement and I'm tending to think I did some damage hauling myself into my husband's Grand Cherokee when we went out on the Sunday. There's no chance he will swap his pride and joy for something more suitable so I've compromised ( as we women do) and ordered a step to assist - a tad undignified but, then, that went out the window when TM flew in! Regards to all Iris UK Sent from my iPad
Re: [TMIC] Re: TM Exhaustion
Linda, what do you take the Nuvigil for - exhaustion? And it really helps?I may talk to my doc and see about using it too.I do have times when it is like a blanket descending on me and I just don’t want to move any more and I realize I am just too tired. Usually I will rest for a while when that happens, but I push pretty hard during the day staying busy.I absolutely hate the warmth of summer.I hate heat.I want to feel really cool all the time, requiring a blanket for comfort. Janice From: Linda Egli Sent: Wednesday, September 18, 2013 6:50 PM To: heyjude48...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: TM Exhaustion Jude, I too have had bad fatigue a miserable summer. The hotter it gets, the worse the fatigue. Sometimes I spend the day in my recliner. I have lost 8 pounds (YEA!) this summer, but it is because of the fatigue it has just been too hot to eat. My PCP started me on a drug called Nuvigil a week ago it is working wonders. This is a newer version of the Provigil that I took about 5 years ago, but Provigil kept me awake 22 hours a day. No side effects with the new drug. Of course it is one of the new drugs not covered by insurance, but I figure I can afford it at least until it cools off here (East Texas). We are expecting temperatures to finally hit highs only in the 80's next week. Take care, Linda E. From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Wednesday, September 18, 2013 12:51 PM Subject: [TMIC] Re: TM Exhaustion Hi Friends, Are any of you suffering with exhaustion? I am so tired all of the time that I can't stand it. What do you do to rid yourself of this malady? I hope that you have had a nice summer and you are looking forward to a beautiful fall. Winter will soon be here and it will be freezing cold here in Michigan. How does your TM make you feel in the cold weather? I love you, Jude
Re: [TMIC] Long time no chat!
Nikki, You are right - it has been very quiet on this website.I would say your world has turned upside down!What's up with you?!Did you actually feel the UTI or was there other evidence of it? I don't think I could feel one if I had it.I did have one, after a few days, when I first went into the hospital with TM. Not being able to feel anything down there, it got a good hold of me and went systemic.I was in big trouble. But, here I am - all better again. You are probably better off without your fiance if he can't stick around during the hard times. You are young and have a lot of life ahead of you and I know these are just words to you now, but, given time, you will see that I am right.Put your time in actions by you, rather than thoughts - be busy.I say that, but I don't really know how TM left you. Are you able to do much on your own?We have all been left with varying degrees of damage from TM. Some are luckier than others. There have been spouses that have walked out too after years of marriage and kids. Don't understand people like that.I have been truly blessed with my husband, family and friends.What about your family - are they close to you? Please email back and let me know how you are doing. Janice -Original Message- From: Nikki Macleod Sent: Saturday, September 14, 2013 4:45 AM To: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: [TMIC] Long time no chat! Hi everyone I've noticed it's been a little quiet lately. I hope everyone is enjoying themselves, having plenty of rest and relaxation - hoping the TM is behaving. On my front I've been enjoying the sunshine on my fundraising day (I'll add a pic), had a 2 week hospital stay for a UTI and a strep B or C infection. Came home and my world has came crashing down - my fiancé of nearly 10 years has told me he is leaving. So, not a happy bunny at the min my mental health is at an all time low but I suppose I'm only 26 and I need to dust myself off and get myself up and about again. I say that but it is easier said than done. Hope everyone else is having a better time. Nikki. Durham, UK. Sent from my iPad
Re: [TMIC] Testing
How long are we supposed to use this new address to our website?Will they tell us when to use what address? Janice From: Barbara H. Sent: Saturday, August 17, 2013 9:21 PM To: Cindy McLeroy Cc: Janice Nichols ; tmic Subject: Re: [TMIC] Testing Thanks all. I know the list gets quiet some times, but I wanted to see if the web site's being down affected the list. I checked with Jim Lubin, and he said that they had changed servers and hadn't had a chance to change all the settings yet, but this link should work for the web site in the meantime: http://myelitis.org/tmic/index.html Barbara H. On Sat, Aug 17, 2013 at 4:13 PM, Cindy McLeroy cindymcle...@socal.rr.com wrote: I think it's the link that is not working, not the emails. I can't get it either. And I've poked around on the myelitis.org site and can't find it. - Original Message - From: margaret shearer To: Janice Nichols Cc: Barbara H. ; tmic Sent: Saturday, August 17, 2013 12:23 PM Subject: Re: [TMIC] Testing Still working over the pond! Sent from Margaret's iPad On 17 Aug 2013, at 17:16, Janice Nichols jannic...@gmail.com wrote: Still working!Just really, really quiet right now. Janice From: Barbara H. Sent: Saturday, August 17, 2013 8:44 AM To: tmic Subject: [TMIC] Testing Just testing to see if the list is still working. I was looking up the TMIC site (http://myelitis.org/tmic/) in order to send the link to someone, and it says, File not found. I messaged Jim Lubin about it but he is on the West coast and may not see it for a while. Just thought I'd check to see if it was still working. Barbara http://barbarah.wordpress.com
[TMIC]
I tried the “myelitis.org/tmic/index.html”. It did not work for me. Should I just stay with my original TMIC email address? Janice
Re: [TMIC] Testing
Still working!Just really, really quiet right now. Janice From: Barbara H. Sent: Saturday, August 17, 2013 8:44 AM To: tmic Subject: [TMIC] Testing Just testing to see if the list is still working. I was looking up the TMIC site (http://myelitis.org/tmic/) in order to send the link to someone, and it says, File not found. I messaged Jim Lubin about it but he is on the West coast and may not see it for a while. Just thought I'd check to see if it was still working. Barbara http://barbarah.wordpress.com
Re: [TMIC] A 'sore' subject
I raised my daughter on Neosporin.She was very active and played outdoors a lot - therefore, the need for Neosporin.It really works fast for healing. Janice -Original Message- From: Pat Voorheis Sent: Monday, August 12, 2013 8:37 PM To: Nikki Macleod Cc: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] A 'sore' subject Nikki, I also take Baclofen for spasms. I take 3 or 4 daily (10mg each). In the state we have an over the counter cream/ ointment called Neosporin. The tube I have states +pain relief ointment. The print is too small to read, however, you can find it on line. It is a rather small mount for the money, but a little goes a long way and every doctor recommends it for minor cuts. I use an prescription antibiotic ointment on my face for rosacea Metronidazole Tropical Gel. Neither of these burn or sting. Patti - Michigan On Aug 12, 2013, at 3:20 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Well hello there peeps, I need some advice please. I suffer from bad spasms especially in my legs. When my legs spasm they literally lock together at the top and lock. I am now left with really bad sores on the very tops of my legs near my lady parts. I use a barrier cream and sudocrem, any ideas anyone? Nikki Durham, UK Sent from my iPad
Re: [TMIC] Fwd: TMIC] Laugh for today
Loved it! Janice From: heyjude48...@aol.com Sent: Tuesday, August 13, 2013 10:15 AM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: TMIC] Laugh for today Hi All, This came off the Quad list. It's kind of cute and not long at all. Humor is good for the soul. Love, Jude -- From: wheelch...@aol.com To: poaj...@sbcglobal.net, quad-l...@eskimo.com Sent: 8/12/2013 7:31:58 P.M. Eastern Daylight Time Subj: Re: [QUAD-L] Laugh for today Humor is Healthyand cures! Best Wishes In a message dated 8/12/2013 5:30:56 P.M. Central Daylight Time, poaj...@sbcglobal.net writes: Friend of mine sent this to me, it was just too great not to be shared. http://biggeekdad.com/2013/08/geriatric-traffic-jam/ Joan
Re: [TMIC] A 'sore' subject
Nikki, so sorry you have this problem.You don't need this on top of everything else.I take Baclofen for leg spasms. You can take up to 8 a day for relief.It really helps the spasms. As for a cream, I would see your dermatologist, surely they would have a good idea on what will help you. Lets us know what you end up doing and how much it helps. Janice, Missouri, USA -Original Message- From: Nikki Macleod Sent: Monday, August 12, 2013 2:20 PM To: heyjude48...@aol.com Cc: tmic-list@eskimo.com Subject: [TMIC] A 'sore' subject Well hello there peeps, I need some advice please. I suffer from bad spasms especially in my legs. When my legs spasm they literally lock together at the top and lock. I am now left with really bad sores on the very tops of my legs near my lady parts. I use a barrier cream and sudocrem, any ideas anyone? Nikki Durham, UK Sent from my iPad
Re: [TMIC] Baclofin Pump
I can’t imagine how thrilled you must be to be actually feeling so much better!!!Great! Janice York USA From: margaret shearer margaretshea...@hotmail.com Date: Tue, 23 Jul 2013 17:33:11 +0100 To: Robert Pall robthe...@aol.com Cc: tmic-list@eskimo.com tmic-list@eskimo.com, ahope...@optonline.com ahope...@optonline.com, shirleyabreu2...@msn.com shirleyabreu2...@msn.com, vet2bi...@aol.com vet2bi...@aol.com, iluvt...@hotmail.com iluvt...@hotmail.com, suelau...@optonline.net suelau...@optonline.net, frosscl...@embarqmail.com frosscl...@embarqmail.com, mike.fitzger...@us.deltagalil.com mike.fitzger...@us.deltagalil.com, purple442...@yahoo.com purple442...@yahoo.com, lbieh...@earthlink.net lbieh...@earthlink.net, amy.war...@cigna.com amy.war...@cigna.com, judyd...@aol.com judyd...@aol.com, lbilli...@aol.com lbilli...@aol.com, robthe...@aol.com robthe...@aol.com, cgs...@comcast.net cgs...@comcast.net, mpk0...@comcast.net mpk0...@comcast.net, traqu...@yahoo.com traqu...@yahoo.com, margo.or...@gmail.com margo.or...@gmail.com, ppet...@wiley.com ppet...@wiley.com, campeo...@msn.com campeo...@msn.com, bac...@ramapo.edu bac...@ramapo.edu, aac...@rkco.com aac...@rkco.com, suela...@aol.com suela...@aol.com, tikicon...@verizon.net tikicon...@verizon.net, fd...@aol.com fd...@aol.com, baea...@aol.com baea...@aol.com, fulltimewmc9...@aol.com fulltimewmc9...@aol.com, mae...@thestettlergroup.com mae...@thestettlergroup.com, rmom...@comcast.net rmom...@comcast.net, nzipu...@yahoo.com nzipu...@yahoo.com, caree...@aol.com caree...@aol.com, arp1...@aol.com arp1...@aol.com, tac8...@aol.com tac8...@aol.com, mother...@gmail.com mother...@gmail.com, jandpstev...@optonline.net jandpstev...@optonline.net, jaydeeteef...@gmail.com jaydeeteef...@gmail.com, kaysquare...@aol.com kaysquare...@aol.com, mrsde...@aol.com mrsde...@aol.com, louie405phi...@aol.com louie405phi...@aol.com, r1aquil...@aol.com r1aquil...@aol.com, alke...@hotmail.com alke...@hotmail.com, ktek...@aol.com ktek...@aol.com, deefi...@yahoo.com deefi...@yahoo.com, thav...@optonline.net thav...@optonline.net, teamba...@hotmail.com teamba...@hotmail.com, rollinmama...@yahoo.com rollinmama...@yahoo.com, niyu...@yahoo.com niyu...@yahoo.com, doctora...@aol.com doctora...@aol.com, aberc...@aol.com aberc...@aol.com, sharoni...@yahoo.com sharoni...@yahoo.com, andreeb...@aol.com andreeb...@aol.com, gary5...@comcast.net gary5...@comcast.net, momc...@optonline.net momc...@optonline.net, amanda...@comcast.net amanda...@comcast.net, beans...@aol.com beans...@aol.com, hart...@comcast.net hart...@comcast.net, flynch8...@gmail.com flynch8...@gmail.com, 4scia...@comcast.net 4scia...@comcast.net, ca...@neurologyspecialists.org ca...@neurologyspecialists.org Subject: Re: [TMIC] Baclofin Pump Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 23 Jul 2013 09:33:14 -0700 (PDT) Great updates Robert I have enjoyed reading them . Margaret from TM Scotland Support Group UK Sent from Margaret's iPad On 23 Jul 2013, at 17:24, Robert Pall robthe...@aol.com wrote: This is my third Journal report since receiving my Baclofin Pump on 6/28/13. After the first couple of weeks where I did have some post operation problems (leaking spinal fluid) everything has gotten better and better. I am currently weaning my self off of Lyrica where I was taking 450 mg per day I am now down to 75 mg and will start 50 mg tomorrow and after 10 days be off the drug entirely. I have had my6 pump adjusted twice since the surgery and I am now in effect taking twice the dosage that was being used when the pump was initially implanted. My scars are slowly going away ( I had my cuts closed with glue instead of actual stitches. I am back to swimming one mile of laps per day and walking approximately one mile per day with my pulling 20 month old 75 lb Golden Retriever. I am walking almost normally with no tightening or extra banding due to walking or exercise. In fact the only thing I cannot do is run...and the great thing is that when walking I believe I look normal. After 4 weeks I can honestly say that I am feeling the best I have in 15 years. I consider the decision to have the pump put in me the most significant thing I have ever done to treat6 my TM. closing I could not be happier than I am now. For the people living in the Tri-State arera I would highly recommend my current Neurologist Doctor Neil Holland who not only told me about the benefits of the pump ...he also stated that the pump is totally underutilized when treating conditions such as TM and MS. I strongly urge all TM'rs to at least get the trial to see if they are good candidates for the procedure. The trial takes about 3 hours and is done in the hospital (in my case by Dr. Holland). After only a few minutes after receiving the trial injection I was amazed by the difference in my banding and spasticity. I finally feel I have become proactive with my condition instead
Re: [TMIC] Baclofin Pump
Isn’t medical science terrific!?!?!?! This is truly great news for you and you deserve it. Janice From: Robert Pall Sent: Tuesday, July 16, 2013 12:58 PM To: tmic-list@eskimo.com ; ahope...@optonline.com ; shirleyabreu2...@msn.com ; vet2bi...@aol.com ; iluvt...@hotmail.com ; suelau...@optonline.net ; frosscl...@embarqmail.com ; mike.fitzger...@us.deltagalil.com ; purple442...@yahoo.com ; lbieh...@earthlink.net ; amy.war...@cigna.com ; judyd...@aol.com ; lbilli...@aol.com ; robthe...@aol.com ; cgs...@comcast.net ; mpk0...@comcast.net ; traqu...@yahoo.com ; margo.or...@gmail.com ; ppet...@wiley.com ; campeo...@msn.com ; bac...@ramapo.edu ; aac...@rkco.com ; suela...@aol.com ; tikicon...@verizon.net ; fd...@aol.com ; baea...@aol.com ; fulltimewmc9...@aol.com ; mae...@thestettlergroup.com ; rmom...@comcast.net ; nzipu...@yahoo.com ; caree...@aol.com ; arp1...@aol.com ; tac8...@aol.com ; mother...@gmail.com ; suela...@aol.com ; jandpstev...@optonline.net ; jaydeeteef...@gmail.com ; kaysquare...@aol.com ; mrsde...@aol.com ; louie405phi...@aol.com ; r1aquil...@aol.com ; alke...@hotmail.com ; ktek...@aol.com ; deefi...@yahoo.com ; thav...@optonline.net ; teamba...@hotmail.com ; rollinmama...@yahoo.com ; niyu...@yahoo.com ; doctora...@aol.com ; aberc...@aol.com ; aberc...@aol.com ; sharoni...@yahoo.com ; sharoni...@yahoo.com ; andreeb...@aol.com ; gary5...@comcast.net ; gary5...@comcast.net ; momc...@optonline.net ; amanda...@comcast.net ; beans...@aol.com ; hart...@comcast.net ; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump This is my second journal posting on the progress of the baclofin pump which was inserted in on June 28, 2013. As of yesterday after being cleared by the neurosurgeon to begin doing all activities I once again began my swimming regiment. I had intended on doing a much shorter workout...but when I got into the pool I found I had so much energy that I ended up swimming laps for over one mile. Today I did the same workout with almost zero fatigue. In addition I have started walking my 70 lb Golden Retriever for at least 40 minutes per day...again with no side effects. Unlike last week where I was suffering from spinal fluid leakage, for the past few days I have been feeling better than I have for the past 15 years. I think I am walking better, faster and with far less limping.In fact I can report at this time no negative effects from the surgery. I went and saw my neurosurgeon..Dr Neil Holland today and via a handheld computer he basically doubled the amount of baclofin that I had received as the base amount after surgery. I cannot recommend this procedure highly enough for all TM patients suffering from spasticity and or banding. I believe tghis pump has dramatically in a good way effected the rest of my life.As per the Doctor I should only require a refill (injected directly into the pump) approximately one time a year! Thank god and my new neurologist for making the quality of my life so much better. Anyone interested should speak to their neurologist and ask for a trial. At the trial a 3 hour supply of the medicine is injected directly into the spine. If you are like me the difference in feeling comes close to miraculous. I hope all that are able (and have the proper medical insurance) to seriously consider this surgical option. The worst that can happen is it has no effect and you have it removed. I hope anyone considering this option who desires additional information will call me directly 732-536-5308. Alll the best! Rob in New Jersey .
Re: [TMIC] From hot, sticky, uncomfortable Essex
Food for Thought... Janice From: Cody Sent: Tuesday, July 16, 2013 5:50 PM To: 'Dalton Garis' ; TMIC Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex Dalton, I just refuse to believe the story about the little boy who died from a Sepses infection was only attributable to not having $86.00 to be treated by a dentist. If they didn’t have the $86.00 for the dentist how did they have money for the medical treatment. I don’t know about medical services in Louisiana or New York but in Texas I know that we do have a program that provides for medical treatment and dental care for less fortunate children. It is called CHIPS. I very much support this program. Also FYI I have been in the hospital four or five times since I was diagnosed with TM. Medicare paid for 80% of the hospital cost, including extended ICU care, as well as 80% of my doctors all of whom were specialist. I am proud to say that I was more than happy to pay my 20%. Medicare paid these cost at very significant discounted rates. My 20% was also based on these discounted rates. Even with this I had to pay several thousand dollars for my portion. I cannot believe that anyone thinks for some reason that their country owes them free anything medical, retirement, or whatever. I think this country has some of the best medical care in the world. Many of the best physicians in the world receive their education and intern training in this country. I am appalled that you are anyone else thinks they are entitled to have so much given to them. Since you are an economist you of all people should know there is no such thing as a free lunch. The cost of all of the things you want for free must be borne by your fellow citizens of this proud nation. I am reminded of this quote from former President Gerald Ford: A government big enough to give you everything you want is a government big enough to take from you everything you have. Presidential address to a joint session of Congress (12 August 1974) Cody in Austin, Texas From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Tuesday, July 16, 2013 1:31 PM To: Dalton Garis; I.WHIDDETT; tmic-list@eskimo.com Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex . . . And [please let me rant for a while] Why doesn't this country have free medical insurance for all its citizens ??? What is that ideological secret that this country presumes to understand that the other developed countries, all of which provide free medical care (and decent retirement, child care for working parents and free higher education, also, for that matter), has failed to grasp? How many dollars could be saved with free insurance, thus preventing much more serious and costly complications later on? I read some time ago of a boy in Louisiana who died of Sepses, the deadly blood infection, because his parents lacked the $86.oo needed to have him treated by a dentist for an abscessed tooth! Aren't economies for the purpose of providing for its citizens and societies a better life? Or, are they ideologies with names that we are to worship and for the purity which the welfare of society's members are to be sacrificed ??? Why are we being crucified on the cross of ideological purity? Why are forced to worship names, rather than working to establish an economy—regardless of its label—that serves the needs of all the people in a just and fair manner? [Thank you for letting me rant for a minute, because I hate, as a citizen of this proud nation, to pay even one dollar for medical services.] Dalton Garis Flushing, Queens New York, USA From: Dalton Garis malugss...@gmail.com Date: Tue, 16 Jul 2013 10:59:27 -0700 To: I.WHIDDETT i.whidd...@sky.com, tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 16 Jul 2013 07:58:41 -0700 (PDT) My brother; Who lives in Connecticut and has contracted Lyme disease three times, clearly recalls my getting a tick bite and seeing the tell-tale bull's eye reaction at the bite site on the back of my leg, typical of Lyme disease. I became sick, but lacking any medical insurance didn't do anything about it, and eventually got better on my own. Then, years later, I contract slow-onset TM, get very sick, then mostly recover, with the exception of getting seizures due to an anomaly on the brainstem; plus the usual constant aches, bee-sting pains all over, fatigue and weakness. I take pregabelin, gabapentin, prozac, and dilation for seizures. My brother is convinced that the TM was caused by the latent effects of in-dwelling Lyme bacteria, and I am partially convinced by his point of view; partially, because it was in the Middle East--that caldron of diseases--where I caught, and was diagnosed as having, TM. It was likely a contributing factor that could have increased
Re: [TMIC] Hobbies, Creative Outlets, Amputation
Hello! Well, it is another one of those nites – legs spasming. Have taken an extra baclofen, but it will be a while before it takes affect. I have been playing “Quiddler” a couple afternoons a week (I should say Eddy and I have, when he is not golfing) with friends of ours that live up the street.We absolutely love the card game. Instead of numbers on the cards, this has letters. You are dealt 3, then 4, and on to 10 cards a round. You make whatever words you can out of your cards.It is really fun. I also go to the show once a week with a couple of my friends.What a group. I have TM, another has MS and just had a knee replacement, and the other has just been diagnosed with diabetes. But, we have a lot of fun together. I have also been doing volunteer work in the office of our church about once a month in the morning.Also have done volunteer work at a place called the “Wardrobe”.The people that run it go through all the clothes, etc., that are donated and put them in baskets that we volunteers put on hangers or in shelves for hanging in the main area.Of course, with both volunteer jobs, I am mostly sitting to do the work.I usually come home from the “Wardrobe” pretty pooped! After 6 years with TM now, I am still showing some improvement with leg strength. Of course, I think a lot of it is the implant I have that covers nerve pain.It just makes my legs feel stronger.Well, enough of me. Keep us informed with you and keep posting! Janice From: heyjude48...@aol.com Sent: Thursday, July 11, 2013 2:22 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Hobbies, Creative Outlets, Amputation Hi Everybody~ What are you all doing this summer to pass the time? I've been writing back and forth with a couple of other members and they have sent me pictures of the things that they do for creative hobbies, places they've been and things they like to do. I'm stuck here in bed, in this hot,clammy weather and need some inspiration to get me through these long days. Whatever you're doing to make yourselves happy, will you send me a note and maybe some pictures of what you're doing? Does anyone know of another person who has had a leg or an arm taken off? I want to talk or write to someone who lives with an amputated limb. I am possibly going to have my leg removed, but I can't make that decision without talking to someone who has had it done. Love Hugs, Jude
Re: [TMIC] Baclofin Pump
Yes, Rob, I would be interested in a running account until all settles down into your “new” normal activities. I think you know that I have the spinal implant that creates different sensations throughout my back and legs to cover pain. Just a different way to attack our problems.I also can not have an MRI and have a card I carry with me to go through airports. I have been very happy with mine and it sounds like you are going to be really happy with yours. Keep it up! Janice From: Robert Pall Sent: Thursday, July 11, 2013 6:48 PM To: tmic-list@eskimo.com ; ahope...@optonline.com ; shirleyabreu2...@msn.com ; vet2bi...@aol.com ; iluvt...@hotmail.com ; suelau...@optonline.net ; frosscl...@embarqmail.com ; mike.fitzger...@us.deltagalil.com ; purple442...@yahoo.com ; lbieh...@earthlink.net ; amy.war...@cigna.com ; judyd...@aol.com ; lbilli...@aol.com ; robthe...@aol.com ; cgs...@comcast.net ; mpk0...@comcast.net ; traqu...@yahoo.com ; margo.or...@gmail.com ; ppet...@wiley.com ; campeo...@msn.com ; bac...@ramapo.edu ; aac...@rkco.com ; suela...@aol.com ; tikicon...@verizon.net ; fd...@aol.com ; baea...@aol.com ; fulltimewmc9...@aol.com ; mae...@thestettlergroup.com ; rmom...@comcast.net ; nzipu...@yahoo.com ; caree...@aol.com ; arp1...@aol.com ; tac8...@aol.com ; mother...@gmail.com ; suela...@aol.com ; jandpstev...@optonline.net ; jaydeeteef...@gmail.com ; kaysquare...@aol.com ; mrsde...@aol.com ; louie405phi...@aol.com ; r1aquil...@aol.com ; alke...@hotmail.com ; ktek...@aol.com ; deefi...@yahoo.com ; thav...@optonline.net ; teamba...@hotmail.com ; rollinmama...@yahoo.com ; niyu...@yahoo.com ; doctora...@aol.com ; aberc...@aol.com ; aberc...@aol.com ; sharoni...@yahoo.com ; sharoni...@yahoo.com ; andreeb...@aol.com ; gary5...@comcast.net ; gary5...@comcast.net ; momc...@optonline.net ; amanda...@comcast.net ; beans...@aol.com ; hart...@comcast.net ; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump Here is my first journal after having the Baclofin Pump placed in my body. The surgery took place on 6/28 early morningit took about 2 1/2 hours. After waking in recovery I was transferred to the ICU where I spent the next 24 hours and was then released to go home. Almost as soon as I woke from surgery I could feeol like a weight had been taken off my legs. The banding was significantly reduced. That being said after being released from the hospital I began to suffer severe headaches and nausea. The neurosurgeon advised that I lie flat on my back and drink lots of caffeinated beverages in order to replenish my spinal fluid which he felt was leaking at the catheter site. I did this and still the headaches got worse and worse...to the point where I had to be readmitted to the hospital. At the hospital I was told to stay flat 24/7 and was given antibiotics and a low dose of steroids.After 3 days in the hospital I had them release me even though I was still suffering from headaches and fatigue. Today it is almost 12 days since my surgery and I am finally starting to feel better. The headaches are gone and the fatigue is less. Not everyone getting the Baclofin Pump goes through the leakage...they say one in 10I was one of them. I know that so far everything has been negative...yet I am still very happy I had the procedure. My legs feel better than they have in 15 years and they are likely to improve even more as the dosage is increased. The pump does stick out of my left side lateral to my naval and is the size of a powderpuff. It is made of titanium and is only slightly under my skin. The surgery consisted of placing the pump on the left side of my naval and the catheter is inserted through a separate cut near my spine. The catheter is placed in the spinal fluid as near as possible to my lesion. The pain from the surgery is minimal and if it were not for the side effects I encountered would have been a piece of cake.The pump is refilled approx. twice per year by an injection through the skin directly into the pump. The pump is programmed by the neurologist via a handheld computer. It is my hope and expectation that this pump will greatly benefit the quality of my life. I should be able to walk better,faster and with far less fatigue and banding. I have no restrictions on physical activity once the sutures have healed (about 2-3 weeks). I can resume swimming and almost any activity my body allows me to do.I will be able to walk my 70 lb Golden retriever and not have a problem even when he sees a rabbit and starts to pull me. I will have to carry a special medical card when I fly as the pump will set off airport alarms. The only other thing I cannot do is get an MRI. I am not ready to recommend and or endorse the pump for everyone. The people who it will help the most are the ones suffering from spasticity and banding. I will keep everyone up to date on my progressand that being said I would recommend
Re: [TMIC] Friends
Nikki, you are right on!! Janice -Original Message- From: I.WHIDDETT Sent: Saturday, July 06, 2013 8:06 AM To: nmacleo...@yahoo.co.uk Cc: tmic-list@eskimo.com Subject: [TMIC] Friends Nikki, just been reading Dalton's words and I totally agree with his response to how are you. I always say fine. This is partly for the reason he gives but also because I learnt early on that it is impossible for any non- TMer to understand our symptoms - certainly unlike anything they will ever have experienced - and I'm all out of patience in trying to explain. By far the most aggravating question to be asked is Are you better now?! Iris
Re: [TMIC] RE: TM Weather
Dalton, you really are a travelling man!!! Great descriptions. Janice From: Dalton Garis Sent: Saturday, July 06, 2013 12:48 PM To: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] RE: TM Weather The Northeast is probably the best bet for jobs, and with its temperate climate, OK w.r.t. pain, but it experiences lots of allergies, pressure changes and weather extremes. The other shot is the Pacific Northwest to the West of the Cascades, if—and this is a big if—you can live with overcast skies all the time. Some of the most picturesque spots on earth are found high up the west side of the Cascade Mountains in Washington State, little towns on the slopes, all but snowed in in the wintertime and mild in the summer, surrounded by gigantic old-growth firs, spruces and hemlocks. Of course, there is none but local service work in such little towns—dentist, the lawyer, the mechanic, the doctor (likely the same person!). I lived on the Olympic Peninsula four years, in Port Angeles. It had three seasons, a cool summer, a chilly, wet winter, but not too much freezing temperatures; and also a fine and dry early to late fall season. And a big advantage in the Pacific Northwest is the absence of flying bugs, which, unfortunately, also means almost no songbirds. There are also almost no communicable diseases in the Pacific Northwest. I am not up to date regarding the deer tick and Lyme complex that has swept the country over the past four decades; but with deer not as plentiful as in the Northeast, the South and Midwest, it should be less of a problem there. For a constantly cool climate without temperature extremes and almost no snow in winter or heat waves in summer go the Olympic Peninsula, but do this only if you can live without seeing the sun or the stars for weeks or months at a time. (Hey, when the sun comes out, we don't tan; we rust!) Port Townsend is best, a charming town with lots of interesting shops, more sun than Port Angeles, and lots of fine old wood-frame Victorian housing. Ferries connect you directly with Seattle and Victoria, British Columbia. Live in Port Angeles and be connected by ferry to Victoria, British Columbia, and thence to Vancouver and the Inner Passage, some of the most majestically beautiful country there is. Less expensive than Port Townsend, Port Angeles has been getting more interesting over the years. When I lived there there you fished, worked in the saw mill or cut timber, unless you operated a store or business. But now it has turned into a more rounded economy. On the Pacific Coast there are the old towns of Hoquiam or Cosmopolous on Grays Harbor. But you are really out there with these towns. Nice as they are, with their old Victorian housing stock and old streets, don't expect many visitors from the East! With the internet, however, we are not as isolated as before. Colorado (lived there a year) and New Mexico (lived there a year, also) are nice, but getting very expensive. Montana is very nice, (spent some time there) west of the Rockies. Much of it used to be sheep country and now also winter tourism, which drives up prices. To the east is high and mostly dry wheat country. Same for Oregon and Washington. But Montana's economy may be expanding from just natural resource-based to a more rounded economy including more job opportunities. That's all I have. Never lived in the Upper Midwest. Lived in Texas three years and North-central Florida nine years; but you suggest they are leaving there. Dalton Garis Flushing, NY 11354 (718) 838-0437 From: heyjude48...@aol.com Date: Saturday, July 6, 2013 11:47 AM To: tmic-list@eskimo.com Subject: [TMIC] RE: TM Weather Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Jul 2013 09:42:49 -0700 (PDT) Hi All, Have a question...how does the weather affect your TM? I have a friend who is moving from Florida and isn't sure where she is going yet. She wants to find a place where she is free from pain and where her husband can find work. I told her about Michigan, but don't know about other states. What can you all tell her? She is on Facebook, but I can pass on all of your information on to her. Thank you, Jude Michigan
Re: [TMIC] Friends
Iris, your ex-friend was a jerk.Just stay with the good ones. Janice -Original Message- From: I.WHIDDETT Sent: Sunday, July 07, 2013 1:22 AM To: Susan Kleinz Cc: nmacleo...@yahoo.co.uk ; tmic-list@eskimo.com Subject: Re: [TMIC] Friends Susan, you can't win. When I was frustrated enough to let my feelings show with a particular friend the patronising response was that people change when they're ill..!!! Iris Sent from my iPad On 6 Jul 2013, at 20:28, Susan Kleinz skle...@cox.net wrote: amen Iris. I do the exact same thing. I also hate being told I look good, when I am in excruciating pain. This ™ has ruined my life, and I'm pissed! On Jul 6, 2013, at 6:06 AM, I.WHIDDETT i.whidd...@sky.com wrote: Nikki, just been reading Dalton's words and I totally agree with his response to how are you. I always say fine. This is partly for the reason he gives but also because I learnt early on that it is impossible for any non- TMer to understand our symptoms - certainly unlike anything they will ever have experienced - and I'm all out of patience in trying to explain. By far the most aggravating question to be asked is Are you better now?! Iris
Re: [TMIC] Do you find that friends have 'drifted' away since TM??
Nikki, I have a few who turned their backs on me, but they were not really good friends.Basically, all of my better friends really stepped up to the plate and stayed with me - 6 years.I am so very lucky to have the family I have too - they are the best. Janice -Original Message- From: Nikki Macleod Sent: Friday, July 05, 2013 4:19 PM To: tmic-list@eskimo.com Cc: Jude Hoops Subject: [TMIC] Do you find that friends have 'drifted' away since TM?? Hi everyone, just thought I'd bring this subject up - sorry if it's a bit typical. I brought this up because I don't know about anyone else, but I've certainly found out who my real friends are. The friends that are there for you no matter what - whether you can walk or not, whether your in a wheelchair, need help with toileting needs, feed you, provide encouragement and be there as a shoulder to cry on when you need it. That's what friends are supposed to be; there through thick and thin through both the good and bad times. Unfortunately most of my friends didn't see it that way and I lost most of my friends but at least I know the friends I do have are TRUE friends because people just tend to see the wheelchair but, its still the same person inside. Good job I have a fantastic fiancé who I met when I was 16 years old (I am 26 now) and has been with me before and after the TM struck (Feb 2011). I also have a great family and GP who are my support network. I was just wondering if anyone else found they lost so called friends because of TM? Nikki Durham, UK. Sent from my iPad
Re: [TMIC] Additional July Birthday
HAPPY BIRTHDAY, AMY, AND ALL THE REST OF JULY BIRTHDAYS!!! Janice From: amy shultz Sent: Monday, July 01, 2013 5:59 AM To: TM group Subject: [TMIC] Additional July Birthday Amy Shultz July 1st Birthday
[TMIC]
Hello! When I have read the stories of how TM first attacked you all, some/many have said that you had a severe pain around the middle of your body – banding.And for some, it has stayed with you.I would like a response from all of you as to whether or not your TM started with the severe pain or not. Also, is it still with you today or did it get better with time/meds. I would like to be able to give my doc some kind of percentage of how TM has hit myself and others. Would really appreciate responses. Thanks, Janice
Re: [TMIC] are you still receiving me?
Barbara, just got this email and the email you sent about TM. You are loud and clear. Janice From: Barbara H. Sent: Monday, June 24, 2013 6:08 PM To: Robert Pall Cc: tmic-list@eskimo.com Subject: Re: [TMIC] are you still receiving me? Still receiving your e-mails. I think I got something that was odd looking from your address but just deleted it. Barbara H. http://barbarah.wordpress.com On Thu, Jun 20, 2013 at 8:24 AM, Robert Pall robthe...@aol.com wrote: I was hacked and had to change my password...sorry if I caused any of you problems. Rob in NJ
[TMIC]
Thanks everyone - I really appreciate the responses. Janice
Re: [TMIC] Baclofen Pump
What a great support group we have! How nice to have input from those who already have the pump.Good luck to all of you. Janice From: Deb Monteleone Sent: Friday, June 21, 2013 5:17 PM To: 'Robert Pall' ; tmic-list@eskimo.com ; ahope...@optonline.net ; shirleyabreu2...@msn.com ; vet2bi...@aol.com ; iluvt...@hotmail.com ; suelau...@optonline.net ; frosscl...@embarqmail.com ; mike.fitzger...@us.deltagalil.com ; purple442...@yahoo.com ; lbieh...@earthlink.net ; amy.war...@cigna.com ; judyd...@aol.com ; lbilli...@aol.com ; cgs...@comcast.net ; mpk0...@comcast.net ; traqu...@yahoo.com ; margo.or...@gmail.com ; ppet...@wiley.com ; campeo...@msn.com ; bac...@ramapo.edu ; aac...@rkco.com ; suela...@aol.com ; tikicon...@verizon.net ; fd...@aol.com ; baea...@aol.com ; fulltimewmc9...@aol.com ; mae...@thestettlergroup.com ; rmom...@comcast.net ; nzipu...@yahoo.com ; caree...@aol.com ; arp1...@aol.com ; tac8...@aol.com ; mother...@gmail.com ; suela...@aol.com ; jandpstev...@optonline.net ; jaydeeteef...@gmail.com ; kaysquare...@aol.com ; mrsde...@aol.com ; louie405phi...@aol.com ; r1aquil...@aol.com ; alke...@hotmail.com ; ktek...@aol.com ; deefi...@yahoo.com ; thav...@optonline.net ; teamba...@hotmail.com ; rollinmama...@yahoo.com ; niyu...@yahoo.com ; doctora...@aol.com ; aberc...@aol.com ; aberc...@aol.com ; sharoni...@yahoo.com ; sharoni...@yahoo.com ; andreeb...@aol.com ; gary5...@comcast.net ; gary5...@comcast.net ; momc...@optonline.net ; amanda...@comcast.net ; beans...@aol.com ; hart...@comcast.net ; flynch8...@gmail.com Subject: RE: [TMIC] Baclofen Pump Hi Rob, I can’t wait to hear you say your pain is greatly reduced or gone. I had my pain pump (same pump) put in on June 5th. I was uncomfortable for about 3 days, then the surgical areas felt so much better. You can’t do much but hang out, I organized all my screws, bolts, nuts, etc. It occupied about 4 days and now I know what I have and where it is, yeah. I went back to work today, wasn’t too bad. The pump does feel a little odd, really from the outside, under my skin I don’t really notice it. I started the Prialt at a dosage of 2 as your body needs to acclimate to it. He said most people seem to feel some release at a dosage of around 4. I was raised to 3 this Wednesday, most likely 3.5 next Tuesday. I’m hoping 4-5 is when I’ll feel something, but still not sure Prialt will work for me. He also told me when they first started using Prialt they started the patients at a dosage of 10! This is why so many people had and still have such problems. That made me feel better about using it, they learned to start low and increase slowly. It also makes me feel horrible that so many people were made so sick. No need for you to worry, the pump with Baclofen had been around a long time with no problems and has helped so many people. Make it a great day, Deb From: Robert Pall [mailto:robthe...@aol.com] Sent: Wednesday, June 19, 2013 9:29 PM To: tmic-list@eskimo.com; ahope...@optonline.net; shirleyabreu2...@msn.com; vet2bi...@aol.com; iluvt...@hotmail.com; suelau...@optonline.net; frosscl...@embarqmail.com; mike.fitzger...@us.deltagalil.com; purple442...@yahoo.com; lbieh...@earthlink.net; amy.war...@cigna.com; judyd...@aol.com; lbilli...@aol.com; robthe...@aol.com; cgs...@comcast.net; mpk0...@comcast.net; traqu...@yahoo.com; margo.or...@gmail.com; ppet...@wiley.com; campeo...@msn.com; bac...@ramapo.edu; aac...@rkco.com; suela...@aol.com; tikicon...@verizon.net; fd...@aol.com; baea...@aol.com; fulltimewmc9...@aol.com; mae...@thestettlergroup.com; rmom...@comcast.net; nzipu...@yahoo.com; caree...@aol.com; arp1...@aol.com; tac8...@aol.com; mother...@gmail.com; suela...@aol.com; jandpstev...@optonline.net; jaydeeteef...@gmail.com; kaysquare...@aol.com; mrsde...@aol.com; louie405phi...@aol.com; r1aquil...@aol.com; alke...@hotmail.com; ktek...@aol.com; deefi...@yahoo.com; thav...@optonline.net; teamba...@hotmail.com; rollinmama...@yahoo.com; niyu...@yahoo.com; doctora...@aol.com; aberc...@aol.com; aberc...@aol.com; sharoni...@yahoo.com; sharoni...@yahoo.com; andreeb...@aol.com; gary5...@comcast.net; gary5...@comcast.net; momc...@optonline.net; amanda...@comcast.net; beans...@aol.com; hart...@comcast.net; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump Well I am finally going to do it. I have completed my pre-certification and I am scheduled for surgery a week from tomorrow. I am both stressed and excited. I am excited about the possibility of feeling significantly better after suffering almost 16 years with this awful affliction. I am stressed about having a titanium pump attached to my spinal fluid. I promise the group I will give daily reports after the surgery to let all of you know what benefits I come in to. I hope this lets me walk better,takes away the awful banding and lets me live a more normal life. All the best! Rob in New Jersey
Re: [TMIC] Deb's Pain Pump Surgery Results
By all means, keep us posted on progress. Janice From: Deb Monteleone Sent: Tuesday, June 11, 2013 12:03 PM To: 'Janice Nichols' Cc: tmic-l...@eskimo.net Subject: RE: [TMIC] Deb's Pain Pump Surgery Results Janice, I would rather have gone your route but they said it would not help my type of pain. Glad it is working for you. Will let you all know within the next month or so how well it worked (takes long time to titrate dosage). Make it a great day, Deb From: Janice Nichols [mailto:jannic...@gmail.com] Sent: Monday, June 10, 2013 10:59 AM To: Deb Monteleone; TMIC Subject: Re: [TMIC] Deb's Pain Pump Surgery Results Deb, This sounds a little like my implant covering nerve pain with sensations rather than meds. But, it also sounds like I had less pain than you do.Please keep us posted on each step of the way.Besides being interesting, we really want it to work for you. Sounds like it has already started.Good luck. Janice From: Deb Monteleone Sent: Sunday, June 09, 2013 2:06 PM To: TMIC Subject: [TMIC] Deb's Pain Pump Surgery Results Hi All, Jude, I hope your pain pump quest is going well. Here are the results of my pump implant surgery on Wednesday 6/5 (5yrs to day of 1st TM symptom) The surgery went well. It was a long day; got to hospital at 9:00 am, surgery from 12:00 to about 1:30, then onto recovery and finally left at 6:30 pm. Silly me, I was not expecting it to be this uncomfortable and restraining. The stitches are on lower back, a hockey puck sized pump is under my skin in the front/right and bruises on right side from front to back (path of catheter). The left side is the only area untouched. I can’t really judge the effectiveness of the pain medication as of yet, due to the small amount my body is receiving. Prialt needs to be titrated slowly, it will be a month or more before they can get it up to the level I need. Currently it’s giving the same level as the trial which seemed to help with some pain in my butt and thighs. Thankfully, it seems to be doing the same now. My lower legs and feet are still pretty bad, hopefully the effect will travel further down my legs as they increase the dosage. With another week and a half off of work, I’m sure I’ll be able to heal just fine. Thanks for all your support and friendship. Make it a great day, Deb
Re: [TMIC] Deb's Pain Pump Surgery Results
Deb, This sounds a little like my implant covering nerve pain with sensations rather than meds. But, it also sounds like I had less pain than you do.Please keep us posted on each step of the way.Besides being interesting, we really want it to work for you. Sounds like it has already started.Good luck. Janice From: Deb Monteleone Sent: Sunday, June 09, 2013 2:06 PM To: TMIC Subject: [TMIC] Deb's Pain Pump Surgery Results Hi All, Jude, I hope your pain pump quest is going well. Here are the results of my pump implant surgery on Wednesday 6/5 (5yrs to day of 1st TM symptom) The surgery went well. It was a long day; got to hospital at 9:00 am, surgery from 12:00 to about 1:30, then onto recovery and finally left at 6:30 pm. Silly me, I was not expecting it to be this uncomfortable and restraining. The stitches are on lower back, a hockey puck sized pump is under my skin in the front/right and bruises on right side from front to back (path of catheter). The left side is the only area untouched. I can’t really judge the effectiveness of the pain medication as of yet, due to the small amount my body is receiving. Prialt needs to be titrated slowly, it will be a month or more before they can get it up to the level I need. Currently it’s giving the same level as the trial which seemed to help with some pain in my butt and thighs. Thankfully, it seems to be doing the same now. My lower legs and feet are still pretty bad, hopefully the effect will travel further down my legs as they increase the dosage. With another week and a half off of work, I’m sure I’ll be able to heal just fine. Thanks for all your support and friendship. Make it a great day, Deb
Re: [TMIC] Fwd: Baclofin Pump
I wish you all the luck in the world.They keep coming up with more and more to relieve pain. We just have to trust them and take the plunge. Janice From: Robert Pall Sent: Monday, June 10, 2013 11:17 AM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: Baclofin Pump -Original Message- From: Robert Pall robthe...@aol.com To: tmic-list tmic-list@eskimo.com; ahopeful ahope...@optonline.com; shirleyabreu2005 shirleyabreu2...@msn.com; vet2binnj vet2bi...@aol.com; iluvtsom iluvt...@hotmail.com; suelaufer suelau...@optonline.net; frossclark frosscl...@embarqmail.com; Mike.Fitzgerald mike.fitzger...@us.deltagalil.com; purple442000 purple442...@yahoo.com; lbiehler lbieh...@earthlink.net; amy.warner amy.war...@cigna.com; JudyD203 judyd...@aol.com; lbilliexx lbilli...@aol.com; robthecfo robthe...@aol.com; cgs247 cgs...@comcast.net; MPK0706 mpk0...@comcast.net; traqua22 traqu...@yahoo.com; Margo.Orlin margo.or...@gmail.com; ppeters ppet...@wiley.com; campeoner campeo...@msn.com; baceti bac...@ramapo.edu; aaceti aac...@rkco.com; SueLaQue suela...@aol.com; tikiconway tikicon...@verizon.net; Fdocz fd...@aol.com; Baeason baea...@aol.com; fulltimewmc9841 fulltimewmc9...@aol.com; maegan mae...@thestettlergroup.com; rmomcat rmom...@comcast.net; nzipunks nzipu...@yahoo.com; careenap caree...@aol.com; arp1011 arp1...@aol.com; tac8246 tac8...@aol.com; motherogs mother...@gmail.com; SueLaQue suela...@aol.com; jandpstevens jandpstev...@optonline.net; jaydeeteefour jaydeeteef...@gmail.com; kaysquared05 kaysquare...@aol.com; Mrsdeb39 mrsde...@aol.com; louie405philly louie405phi...@aol.com; r1aquilino r1aquil...@aol.com; alkehoe alke...@hotmail.com; ktekmcg ktek...@aol.com; deefibit deefi...@yahoo.com; thavens thav...@optonline.net; teambambu teamba...@hotmail.com; rollinmama848 rollinmama...@yahoo.com; NIYURYS niyu...@yahoo.com; DOCTORAINK doctora...@aol.com; ABERCHES aberc...@aol.com; ABERCHES aberc...@aol.com; SHARONIZER sharoni...@yahoo.com; SHARONIZER sharoni...@yahoo.com; ANDREEB123 andreeb...@aol.com; GARY5316 gary5...@comcast.net; GARY5316 gary5...@comcast.net; MOMC745 momc...@optonline.net; AMANDACAV amanda...@comcast.net; beans200 beans...@aol.com; harte52 hart...@comcast.net; FLYNCH8280 flynch8...@gmail.com Sent: Mon, Jun 10, 2013 12:15 pm Subject: Baclofin Pump After months of deliberations and concerns I am finally going to have the Baclofin Pump put in my body. After going thru the trial and seeing the results I felt I had to give it a try. I am going for the Pre certification tomorrow and having the surgery on the 27th. My main concern is that I am one of the walking wounded. I can walk (short distances), drive and have very little pain. That being said the banding (tightness in my legs have been the worst part of my condition for more than 15 years! I will keep mall of you up to date on my progress. My neuro said that the Baclofin Pump could be used so much more often than it presently isI will let you know in a few weeks if it was worth the effort and the risk. All the best! Rob Pall in New Jersey
Re: [TMIC] Re: Transverse Myelitis
Nikki, I really hope you continue to have improvement. Even 6 years after TM hit me, I am improving in little ways. Hang in there. Janice From: Nikki Macleod Sent: Wednesday, May 29, 2013 5:05 PM To: Dalton Garis Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: Transverse Myelitis Hi everyone I hope u are well i am Nikki 26 years old and live with my fiancee who is also my full-time carer.Amy it just demonstrates the fact that many people around struggle to deal with so we are left quite alone but if you have the fight and determination like you we can get through it. Like you also I was affected highly at C4. This is my story below: On Mon 14th Feb 2011 I felt really poorly and had had a rough weekend. I was suffering from a chest infection but I felt somewhat different that day and was in bed really early as I was suffering with a severe headache so bad I couldn't stand light or lift my head from the pillow. I went to sleep and woke up with my partner at 5am, and at that point I couldn't feel my legs or move them but thought I had trapped a nerve. I also still felt poorly but I also had another symptom which was a painful and stiff neck. After waking up at 8am when my mam came to my house the numbness was going up my body and my noon I could only move my head. My fiancé and mam decided to call 999 and I went to the Emergency Department had an MRI, transferred to a specialist hospital where I was put on 5 days of IV steroids and weeks of oral steroids, I was also given plasma exchange but it was too late as I hadn't been took seriously on my previous visits to AE. Luckily I could still breathe on my own and after intensive physiotherapy over 2 years I gained partial usage of my arms which has improved over time. I was 23 years old when TM struck and spent my 24th birthday in one of the many hospitals I was in and put on a brave face for the sake of everyone else. Even at the time doctors have told me I will never walk again and i have been told that over and over again. Its something which I have came to terms with but others haven't and recently I've had my Achilles' tendons cut to try and correct the severe foot drop toe drop as I won't need them to walk. I have a lot of continued support of my fiancée who has been my rock and total support through all of this - I couldn't have got through it without him. He's one in a million!! The saying you don't know what you've got til it's gone has never been more fitting. Who thought that knowing when you need the toilet would suddenly one day be the only thing you ever want BUT he ho that is why WE HAVE EACH OTHER to bounce and share things. Sorry for rambling! Nikki Durham, UK. Sent from my iPad On 29 May 2013, at 21:39, Dalton Garis malugss...@gmail.com wrote: Janice; Has Amy tried Lyrica? For me it is the only medicine that has kept the bee stings away. Dalton (TM Class of '2009) From: Janice Nichols jannic...@gmail.com Date: Wed, 29 May 2013 11:38:19 -0500 To: amy shultz mic...@hotmail.com, TM group tmic-list@eskimo.com Subject: Re: [TMIC] Re: Transverse Myelitis Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 29 May 2013 09:38:16 -0700 (PDT) Amy, I think we have talked before, but I did not know the extent of how TM left you. I am so very sorry that that damn TM did this to you and at such a young age.You are a very courageous lady.You have not let TM claim the real you - just your body. But, it would be pretty hard to live with.Family and good friends are a tremendous help in this situation. Some with TM have lost spouses, family, and friends due to TM.They just don’t want to deal with it – so you are lucky in that way.I am too. Keep bugging the doc’s to find a medication that can ease the pain – with all that is out there now, there has to be something for you for pain relief. Keep in touch with us and let us know what you are doing and how you are doing.Believe me, we care. Janice From: amy shultz Sent: Thursday, May 23, 2013 7:40 PM To: TM group Subject: RE: [TMIC] Re: Transverse Myelitis My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an unrelated seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I
[TMIC]
Hi! I have been out of town for several days to see my daughter.I appreciate the responses I received about people still receiving emails. There does not seem to be a problem at this time. If there is, please notify us. Since this is the most popular vacation time, I would like to know how many of you are (1) able to travel and what all you have to do special to get it done, and (2) where are you planning to go? I am not planning on any travelling time this summer – only place I would go is Alaska where it is cooler anyway.Been there/done that - before TM hit. Janice
Re: [TMIC] Re: Transverse Myelitis
Amy, I think we have talked before, but I did not know the extent of how TM left you. I am so very sorry that that damn TM did this to you and at such a young age.You are a very courageous lady.You have not let TM claim the real you - just your body. But, it would be pretty hard to live with.Family and good friends are a tremendous help in this situation. Some with TM have lost spouses, family, and friends due to TM.They just don’t want to deal with it – so you are lucky in that way.I am too. Keep bugging the doc’s to find a medication that can ease the pain – with all that is out there now, there has to be something for you for pain relief. Keep in touch with us and let us know what you are doing and how you are doing. Believe me, we care. Janice From: amy shultz Sent: Thursday, May 23, 2013 7:40 PM To: TM group Subject: RE: [TMIC] Re: Transverse Myelitis My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an unrelated seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I was not treated with any steroids or any other treatment. After intense therapy and many prayers after about 8 months I got use of my arms. Not 100% but some. My arms came back very slowly. I was in therapy for months and months. I have yet to show any improvement with my legs and am ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder removed in 03. I havent show much improvement after the one year mark. I hold on to hope that one day there will be treatment for us, or others like us. I deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I have been unable to return to school. It seems I am in and out of the hospital so much it makes doing anything nearly impossible. Last year alone I was inpatient 13 times. Not counting ER visits. I am on over 30 medications a day. I get exhausted very easily and nap alot. But I still enjoy having fun and hanging with family and friends and this TM will NEVER stop me from being me. Amy Shultz Columbus Ohio From: heyjude48...@aol.com Date: Fri, 26 Apr 2013 23:09:12 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
Re: [TMIC] Re: NO E-MAIL
Glad you are still here - haven’t heard from you for a long time.How is your wife? Janice From: elbobberino Sent: Wednesday, May 29, 2013 9:44 AM To: heyjude48...@aol.com ; deer...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: NO E-MAIL Indeed, just about everybody I e-mail to on the TMIC list has moved over to Facebook, me included. I like it because it's easier to read all the recent postings at once instead of going back and forth, etc... And. if there's an item I don't want to disclose to everybody, I can still e-mail individually to y'all. So am still on this list as well. Regards,BobbyJim - Original Message - From: heyjude48...@aol.com To: deer...@aol.com Cc: tmic-list@eskimo.com Sent: Tuesday, May 28, 2013 8:30 PM Subject: Fwd: [TMIC] Re: NO E-MAIL Hi Dee, It's Jude, There hasn't been anything going on, most of everybody we know has gone to Facebook. I can't think of any more questions to ask the list in order to generate more mail and I don't know what to do about it. If you have any suggestions I sure would like to hear them. I have tried so hard to keep this list active, but it seems like something that isn't going to happen. I've been here for 12 years and this list has become a part of my heart. What can we do to change things? Any ideas? I'm going to forward this to the whole group, but you can answer me at my email address anytime. I want other people to begin making this list a priority. And I hope it happens soon. And, anyone else who has an idea about how to make this group active again, please write to me too. I love you all so much. Love Hugs, Jude, TIAD From: jlu...@eskimo.com To: deer...@aol.com CC: tmic-list@eskimo.com Sent: 5/28/2013 8:01:40 P.M. Eastern Daylight Time Subj: [TMIC] Re: NO E-MAIL you might have to subscribe again. send a message to tmic-list-requ...@eskimo.com with the subject subscribe On Tue, May 28, 2013 at 3:15 PM, deer...@aol.com wrote: I HAVE NOT RECIEVED ANY E-MAIL FOR TWO WEEKS. I HOPE I AM STILL ON THE LIST. I HAVE BEEN A MEMBER FOR 14 YEARS. MARIE
Re: [TMIC] Re: NO E-MAIL
What are the avonex pricks? What are they for? Janice From: elbobberino Sent: Wednesday, May 29, 2013 10:01 AM To: Janice Nichols ; heyjude48...@aol.com ; deer...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: NO E-MAIL Da Boss is just fine, thankyeshe's had 538 Avonex pricks so far, and you couldn't tell she's afflicted, except she gets tired (and cranky) awfully fast. Yeah, I don't write as much as I used to.SheWhoMustBeObeyed keeps me busy with her hunny-doo list. And most of my postings go to my Facebook page (BobbyJim Hijar) regards, Bobby Jim - Original Message - From: Janice Nichols To: elbobberino ; heyjude48...@aol.com ; deer...@aol.com Cc: tmic-list@eskimo.com Sent: Wednesday, May 29, 2013 11:55 AM Subject: Re: [TMIC] Re: NO E-MAIL Glad you are still here - haven’t heard from you for a long time.How is your wife? Janice From: elbobberino Sent: Wednesday, May 29, 2013 9:44 AM To: heyjude48...@aol.com ; deer...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: NO E-MAIL Indeed, just about everybody I e-mail to on the TMIC list has moved over to Facebook, me included. I like it because it's easier to read all the recent postings at once instead of going back and forth, etc... And. if there's an item I don't want to disclose to everybody, I can still e-mail individually to y'all. So am still on this list as well. Regards,BobbyJim - Original Message - From: heyjude48...@aol.com To: deer...@aol.com Cc: tmic-list@eskimo.com Sent: Tuesday, May 28, 2013 8:30 PM Subject: Fwd: [TMIC] Re: NO E-MAIL Hi Dee, It's Jude, There hasn't been anything going on, most of everybody we know has gone to Facebook. I can't think of any more questions to ask the list in order to generate more mail and I don't know what to do about it. If you have any suggestions I sure would like to hear them. I have tried so hard to keep this list active, but it seems like something that isn't going to happen. I've been here for 12 years and this list has become a part of my heart. What can we do to change things? Any ideas? I'm going to forward this to the whole group, but you can answer me at my email address anytime. I want other people to begin making this list a priority. And I hope it happens soon. And, anyone else who has an idea about how to make this group active again, please write to me too. I love you all so much. Love Hugs, Jude, TIAD -- From: jlu...@eskimo.com To: deer...@aol.com CC: tmic-list@eskimo.com Sent: 5/28/2013 8:01:40 P.M. Eastern Daylight Time Subj: [TMIC] Re: NO E-MAIL you might have to subscribe again. send a message to tmic-list-requ...@eskimo.com with the subject subscribe On Tue, May 28, 2013 at 3:15 PM, deer...@aol.com wrote: I HAVE NOT RECIEVED ANY E-MAIL FOR TWO WEEKS. I HOPE I AM STILL ON THE LIST. I HAVE BEEN A MEMBER FOR 14 YEARS. MARIE
Re: [TMIC] Re: Transverse Myelitis
She probably has seen your email.Sounds like she has been on a lot. Janice From: Dalton Garis Sent: Wednesday, May 29, 2013 3:39 PM To: Janice Nichols ; amy shultz ; TM group Subject: Re: [TMIC] Re: Transverse Myelitis Janice; Has Amy tried Lyrica? For me it is the only medicine that has kept the bee stings away. Dalton (TM Class of '2009) From: Janice Nichols jannic...@gmail.com Date: Wed, 29 May 2013 11:38:19 -0500 To: amy shultz mic...@hotmail.com, TM group tmic-list@eskimo.com Subject: Re: [TMIC] Re: Transverse Myelitis Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 29 May 2013 09:38:16 -0700 (PDT) Amy, I think we have talked before, but I did not know the extent of how TM left you. I am so very sorry that that damn TM did this to you and at such a young age.You are a very courageous lady.You have not let TM claim the real you - just your body. But, it would be pretty hard to live with.Family and good friends are a tremendous help in this situation. Some with TM have lost spouses, family, and friends due to TM.They just don’t want to deal with it – so you are lucky in that way.I am too. Keep bugging the doc’s to find a medication that can ease the pain – with all that is out there now, there has to be something for you for pain relief. Keep in touch with us and let us know what you are doing and how you are doing.Believe me, we care. Janice From: amy shultz Sent: Thursday, May 23, 2013 7:40 PM To: TM group Subject: RE: [TMIC] Re: Transverse Myelitis My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an unrelated seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I was not treated with any steroids or any other treatment. After intense therapy and many prayers after about 8 months I got use of my arms. Not 100% but some. My arms came back very slowly. I was in therapy for months and months. I have yet to show any improvement with my legs and am ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder removed in 03. I havent show much improvement after the one year mark. I hold on to hope that one day there will be treatment for us, or others like us. I deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I have been unable to return to school. It seems I am in and out of the hospital so much it makes doing anything nearly impossible. Last year alone I was inpatient 13 times. Not counting ER visits. I am on over 30 medications a day. I get exhausted very easily and nap alot. But I still enjoy having fun and hanging with family and friends and this TM will NEVER stop me from being me. Amy Shultz Columbus Ohio -- From: heyjude48...@aol.com Date: Fri, 26 Apr 2013 23:09:12 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
Re: [TMIC] Fwd: Quote of the Day Judith
Well said! Janice From: heyjude48...@aol.com Sent: Thursday, May 16, 2013 10:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: Quote of the Day Judith Hi All, I had to read this one three times before I finally understood what it was saying. I don't know if I like this format or not, what do you all think of it? I love you, Jude -- From: inspirationalda...@inspirationaldaily1.com Reply-to: re...@tamtamtap.com To: heyjude48...@aol.com Sent: 5/16/2013 9:48:47 A.M. Eastern Daylight Time Subj: Quote of the Day Judith Newsletter - Thu, 16 May 2013 Today's Daily Inspiration Life will break you. Nobody can protect you from that, and living alone won't either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could. — Louise Erdrich Inspire Others. Submit a famous quote or even one of your own. Your quote could be published in our newsletter! Have we inspired you? Please tell us about it, we would love to hear what you think! Do you have ideas on how we can improve Inspirational Daily Newsletter? Please share with us. Follow us on Facebook You are subscribed to this newsletter as heyjude48...@aol.com. If you no longer wish to receive this newsletter and want to unsubscribe click here. Unsubscribe by Mail: Support Dept., PO Box 29502 #21320, Las Vegas, NV 89126 Toll Free: 888-840-1465 193350
Re: [TMIC] whats going on?
I got your email. Janice From: Robert Pall Sent: Thursday, May 16, 2013 11:48 AM To: tmic-list@eskimo.com Subject: [TMIC] whats going on? I just received an email starting I was dropped from this list due to excessive bounced emails. I have no idea what this is about as I do not send that much in...and to the best of my knowledge I have never had an email bounced. Rob in New Jersey
[TMIC]
Just sent email to Rob, and it came back unsendable. Anyone else? Janice
Re: [TMIC] CONCUSSION
I will definitely be doing something about it if it happens again - even on a much less severe level. Janice From: Pat Voorheis Sent: Sunday, May 12, 2013 6:11 AM To: Janice Nichols Cc: Gary Thomas ; mailto:tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION My hair stylist h vertigo due these crystals getting jarred during a car accident. She also had hers manipulated back into place and has returned twice in four years for the procedure. Patti On May 11, 2013, at 3:00 PM, Janice Nichols jannic...@gmail.com wrote: Sure, it can happen again.But, I am on the alert now. Janice From: Gary Thomas Sent: Saturday, May 11, 2013 8:55 AM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
[TMIC] CONCUSSION
Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] CONCUSSION
Thanks - will keep this info.Sorry you had an episode too. Janice From: Deb Monteleone Sent: Saturday, May 11, 2013 11:24 AM To: 'Janice Nichols' ; tmic-list@eskimo.com Subject: RE: [TMIC] CONCUSSION Hi Janice, Sorry to hear about your fall. Hope you heal quickly. I can give you some information on vertigo, at least the kind I had a few weeks ago. Yes with all I’ve been going through with pain and testing for the pain pump a little vertigo got thrown in. Ah life is such a joy. I was mostly disoriented when looking down, reaching up and every night when I laid down on the bed. One day I had full blown vertigo on my 2nd story outside deck. All of a sudden I lost my sense of balance, banged into the house wall, tried to stand, stumbled into a chair, tried to stand, stumbled about 5 feet the other way over to a tall table, grabbed on, decided enough trying to stand and stayed holding on to the table while the sky above me circled around. Weird and scary, my stepson passed by and got me to a chair. After a few moments I was fine. My Neurologist sent me for vestibular testing. Our inner ear has a cluster of what they call crystals in an area that connects to vestibular tubes. A crystal can break free from the cluster and enter the tube in which it is now free floating. When you move your head the crystal moves within the tube sending odd signals to the brain causing disorientation. They fixed it within 15 minutes by manipulating my head which moves the crystal through the tube back into the area holding the cluster and the stray crystal hopefully reattaches to it, they have like a sticky coating on them. For 48 hours you have to keep from moving head up, down, etc. to allow it to reattach. Really cool stuff, was skeptical until he did the movements, came back in 5 minutes, tested me (by laying down with head to one side) and I was fine. There are other things that can cause vertigo but I believe this is the most common. Make it a great day, Deb From: Janice Nichols [mailto:jannic...@gmail.com] Sent: Saturday, May 11, 2013 4:26 AM To: tmic-list@eskimo.com Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] CONCUSSION
All we found out from the cat scan was that obviously what my husband had been saying for the last 45 years is that “you are one hard-headed woman!”.He always said “But I love ya anyway” after the hard-headed comment.What a guy. Janice From: Dalton Garis Sent: Saturday, May 11, 2013 5:50 AM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION Good luck to you! I recall when Yogi Barra was catching for the Yanks, when he took a pitch to the head. They took him to the hospital for x-rays. According to the radio announcer, The x-rays found nothing. Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Janice Nichols jannic...@gmail.com Date: Saturday, 11 January 2013 4:26 AM To: tmic-list@eskimo.com Subject: [TMIC] CONCUSSION Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 11 May 2013 01:25:54 -0700 (PDT) Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] CONCUSSION
Sure, it can happen again.But, I am on the alert now. Janice From: Gary Thomas Sent: Saturday, May 11, 2013 8:55 AM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] CONCUSSION
If it happens again, I know what to do - call ER or the doc’s office. Could be a one-time thing, but I seem to beat odds. Janice From: Linda Egli Sent: Saturday, May 11, 2013 9:49 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION Janice, I think you have has enough of an adventure for now! Are the doctors concerned about the vertigo? Take care get better. Linda E. From: Barbara H. barbara...@gmail.com To: tmic-list@eskimo.com Cc: Janice Nichols jannic...@gmail.com Sent: Saturday, May 11, 2013 9:22 AM Subject: Re: [TMIC] CONCUSSION Ouch! Glad nothing was broken - hope you feel better soon! Barbara H. On Sat, May 11, 2013 at 9:55 AM, Gary Thomas gbthomas8...@sbcglobal.net wrote: I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] CONCUSSION
I have heard of TM coming back on people a 2nd time, but have never heard of that kind of myelitis.You seem to beat the odds too!Did it leave you with any problems that you did not already have?Are you on TM FaceBook?You would get a lot of responses to that using facebook. Let me know what you find out - or are you the only one this has happened to? Good luck and email back - am concerned. Janice From: Susan Kleinz Sent: Saturday, May 11, 2013 10:29 AM To: Gary Thomas Cc: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] CONCUSSION Janice: wow. what a bummer. I am so glad you are all right. anybody ever had a Pseudo Exacerbation of Transverse Myelitis? Just got out of 4 hellish days in the hospital where they gave me 1,000 ML of Prednisone (IV) with no lag medication. So, sick as I've ever been! bla bla bla! Sharing my adventure, too! but seriously, has anybody heard of this? Susan in Phoenix On May 11, 2013, at 6:55 AM, Gary Thomas gbthomas8...@sbcglobal.net wrote: I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] Re: Our Buddy Lists
I’m confused, I don’t have a buddy list. Janice From: heyjude48...@aol.com Sent: Monday, May 06, 2013 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Our Buddy Lists Hi Everyone! I just want to ask all of you who still keep email addresses if you would please add me to your Buddy Lists. I used to see so many people on my Buddy List, but now it's dwindled to two people. We need to be better hooked up to each other and instead of having to look everyone up in my address book, it would be nice to only have to click on a name to chat or send and IM. I think it would be fun! If you decide to add my name or the name of anyone else, we have to notify the other person, that way we will all be on the same page, so to speak. Let me know how you feel about doing this. I've been thinking about it for a few days and think it's a good idea. Guys included too. Love and hugs, Jude tiad
Re: [TMIC] Re: Pain Medication Jude, Michigan
AOL EmailDeb, You are obviously doing all you can to rid yourself of as much pain as possible. I am really hoping and praying this works for you. Good luck, kiddo! Janice From: Deb Monteleone Sent: Sunday, May 05, 2013 7:50 PM To: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: RE: [TMIC] Re: Pain Medication Jude, Michigan Hi Jude, Sorry took so long to reply. I have not read my emails for 2 ½ weeks or so. I went for three trials by having the medicine injected into my spinal fluid before actually implanting the pump. I am going this Thursday to meet with the surgeon. First trial was Prialt (snail venom), this did help somewhat, I was able to stand and sit longer without as much pain and my pants were not electrocuting my thighs, not sure about lower legs. Second was Baclofen, also helped somewhat. I actually helped with some of the sharper pains which surprised me, but I didn’t like how I felt on it and I couldn’t sit up as long. Third was morphine which seemed to be helping but then my face got itchy and they ended up giving me a Benadryl shot so I just got groggy and lay down mostly. My general doctor told me she also had same reaction to Morphine during her C-section. Both of us have had intravenous morphine in the hospital with no reaction. She said they used a (started with a D) morphine which caused the reaction. Never knew there were different morphine’s. All of these tests involved me staying at the facility on an uncomfortable portable stretcher/bed for 6 hours. It was to allow them to monitor my reactions as the medicine peaks at around 4 hours after injection. I was not clear on what direction to go but the pain Doctor was happy with results. He is highly regarded in his field so I’m going to go with what he suggests. I am going forward with the Prialt which needs to be titrated slowly, so not sure how long it is supposed to be before I feel full results. He also might end up putting a very small amount of Morphine (?). Thursday I will hopefully have a date for the implant surgery. After that the pain doctor is who I would continue to see for refills, checkups, etc. I just hope it helps. Good luck with your trials. Make it a great day, Deb From: heyjude48...@aol.com [mailto:heyjude48...@aol.com] Sent: Thursday, May 02, 2013 8:26 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Pain Medication Jude, Michigan Hi All, I'm trying this color combination for a change. I went to the Dr. for the third time today for the trial on the pain pump and he used Fentanyl this time. Again, I had no results, absolutely nothing! I go back next Wed for the fourth time and he's going to use a larger dose of Fentanyl. I don't know what he's expecting to find, because I had no kind of pain relief at all. Does anyone have a suggestion on what kind of pain medication he should try? I'm at a loss. So far we've used Ocycodone and Dilaudid. What kind of experiences have you had with pain meds...the strong ones? Please let me know, I'm at my wit's end! Thank you and know that I think of you every day. Jude, TIAD Michigan
[TMIC] Fw: Juggler This is hilarious!!!!
Guys, I really enjoyed this and hope you will too.A good laugh is always good for us. Janice This is about 10 minutes long, but it is funny If you do nothing else today, watch this video. It is excellent clean comedy. Priceless!!! Juggler is funny, but the best part is watching Tip O’Neil and Ronald Reagan laugh together – also the prank he plays on Jim Baker is good stuff! How politicians acted in classier days! Good clean family fun. CLICK HERE: https://www.youtube.com/embed/n6mbW-jMtrY?rel=0
[TMIC] SPAM
Hi TM’ers! It seems several people are getting our website mail put in their spam folders. I guess we all better keep checking spam when looking for anything from this website. Hopefully, this can be fixed or will just die out. Janice
Re: [TMIC] Re: Attention -The TMIC List
Sorry I am late to respond.Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
Re: [TMIC] Re: Pain Medication Jude, Michigan
AOL EmailI take Vicotin (sp?)for pain - really works for me. Janice From: heyjude48...@aol.com Sent: Thursday, May 02, 2013 7:26 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Pain Medication Jude, Michigan Hi All, I'm trying this color combination for a change. I went to the Dr. for the third time today for the trial on the pain pump and he used Fentanyl this time. Again, I had no results, absolutely nothing! I go back next Wed for the fourth time and he's going to use a larger dose of Fentanyl. I don't know what he's expecting to find, because I had no kind of pain relief at all. Does anyone have a suggestion on what kind of pain medication he should try? I'm at a loss. So far we've used Ocycodone and Dilaudid. What kind of experiences have you had with pain meds...the strong ones? Please let me know, I'm at my wit's end! Thank you and know that I think of you every day. Jude, TIAD Michigan
[TMIC]
Thanks to all of you TM’ers.I heard from so many of you that I am sure everything is okay with emails and responses. Thank you very much. Janice
Re: [TMIC] Shingles vaccination
I had the shingles shot about 2 years after TM hit.Have had no problems. My doc felt that with everything else going haywire, I did not need another complication.I have been fine. Janice From: Dalton Garis Sent: Tuesday, April 30, 2013 4:35 AM To: I.WHIDDETT ; mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Shingles vaccination It might be that, A better question is whether having TM and taking all these medications actually suppresses or even eliminates the threat from Shingles. Because on this side of the Pond we also are getting bombarded with advertisements advising seniors to get the inoculation. Shingles is another auto-immune disease in the Herpes-Simplex family, is that right? And TM is also an auto-immune disease similar to MS, correct? Then, accordingly, perhaps getting the Shingles vaccine might even suppress some TM symptoms, rather than risking an aggravation of symptoms. That would depend, of course, on how the vaccine actually worked to achieve the desired result. I will use myself as a test, if you all would like, and see what happens, if you can wait a month or so for any possible developments. I am retired and spend my days writing and some lecturing and have only domestic-type chores, so the risk of a life-degrading event, even were a flair-up to occur, is rather limited. Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: I.WHIDDETT i.whidd...@sky.com Date: Tuesday, 30 January 2013 2:52 AM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: [TMIC] Shingles vaccination Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 29 Apr 2013 23:52:16 -0700 (PDT) From September this year, UK over 70s are to be offered shingles vaccination. Does anyone have an opinion as to safety or otherwise, please? Past experience tells me my neurologist will give his usual helpful 'your choice' advice! Iris Sent from my iPad
[TMIC] New e-mail address
I have changed my e-mail address to: jmailto:jannic...@gmail.com . Please update your list as I enjoy getting your e-mails. Thanks
Re: [TMIC] Anniversary
Betty, I have just hit my 6th anniversary. What I remember most about that day is fear - with a sudden loss of strength in my legs, and fear again when the ER nurse looked at me and said we don't know what is wrong with you, but you are a very sick lady.Much hard work (blood, sweat, and tears) and good improvement have marked my 6 years. From being paralyzed from shoulder blades to toes, I now only need a cane to walk. I admit that my husband being 67 and my being 66 causes me to worry about the later years. But, we have a loving family.I also believe you only live once and, even with TM, I want to make the best of it. Of course, Zoloft helps!!I understand how you feel about leaving the house. I am always afraid I will fall in public, or my bladder will embarrass me, or my colostomy that I now live with will be a problem. I don't want to be defined by a disease - it is just one part of who I am. I also realize there are those who have it much worse than I do. My prayers go out to them every nite. Hang in there and do the best you can to kick TM in the butt!!! Janice -Original Message- From: Betty Clark Sent: Wednesday, April 17, 2013 6:09 PM To: TMIC Subject: [TMIC] Anniversary So today is my lucky (???) seven year anniversary with TM. At this time seven years ago, I was inside an MRI machine for over an hour trying to hold as still as possible while my legs continued to spasm about every three minutes. By far, the worse, most painful day of my life. Though usually fairly optimistic and more on the positive side of my feelings, I find myself in a more pensive and reflective state today. Wondering what the next ten-to-twenty years look like... will I still be able to function well enough on my own, without assistance? Will I be able to keep the ugly monster at bay and not let it completely destroy my outlook on life? Can I continue to find enough joy in my daily existence? I know I will have to forcibly take the reins and get myself out regularly so as to not become a recluse in my own home. I have realized since I had to retire from my job six years ago because of TM, other people's lives have gone on and most have little time to waste coming to visit or entertain me. I must make the effort if I want to maintain any relationships outside my own home and family. Of course, my fervent and continuing prayer is that by some miracle, a cure and treatment will be found that will help everyone saddled with either TM or MS. As I begin another year of pain, medications, limitations, etc., I wish everyone peace of mind and soul. Hugs to all, Betty (in Northern California)
Re: [TMIC] Hello
Anne, Glad you found our group.It would help if we knew what meds you were on. Many of us are on different meds for the same problems. Also, there are some meds that almost all of us take. Some have more painful banding than others too.I do not have “painful” banding, just a pressure feeling. But I am sure you will hear from others that have more of a problem with it. Come on TM’ers.Anne needs help from all of you. Janice From: dee jay Sent: Sunday, March 31, 2013 9:05 PM To: tmic-list@eskimo.com Subject: [TMIC] Hello Hello everyone. My name is Anne and I have just joined your group. I was diagnosed with TM in 1975, completely recovered, and then 23 years later here I am confined to a wheelchair/hospital bed and will be for the rest of my life. I hae just started experiencing this banding and have so many allergies to medications even the doctor does not know what to do. Any help would be appreciated.
Re: [TMIC] Qusetions for group
Dennis, There should be a social worker either at the hospital you were in or the nursing home you are now in that would be able to have this info for you.I would check with the hospital. Other than that, I am no help.Just wish you the best. Janice From: dennis rabalais Sent: Tuesday, March 26, 2013 7:34 PM To: LIST Subject: [TMIC] Qusetions for group Hi. My name is Dennis. I'm looking for feedback. I am 39 years old and in a nursing home. I'd like to know if anybody out there knows of any resources and funding for persons with spinal cord injuries to get help with housing, specialty beds, and other important needs? I'm in need of a turning bed and trying to find equipment to better my life. Also, are there any groups for persons with spinal cord injuries in major cities? I'm looking to move to Houston. Any help is greatly appreciated. Thank you! Sincerely, Dennis Sent from Dennis from Yahoo! Mail on LG Intuition.
[TMIC]
Hi!! Just letting you know that we just got back from a vacation in Nashville, Tennessee.What a great time! I want to thank you, Rick, for the suggestions to see in Nashville. It is quite a city! Things seem pretty quiet on our website.Everybody doing okay?How about you Jude? Doing better? How about you Mary Jaschob – does your husband have the implant in yet?How is it going? I feel like I have been going a really long time from you guys.Hope all are doing well. Janice
Re: [TMIC] RE: TMIC Membership Directory
There are no “butt in’s” in this group.We all appreciate “butt in’s”!! Janice From: Dalton Garis Sent: Wednesday, March 06, 2013 11:01 AM To: rn11...@yahoo.com ; heyjude48...@aol.com Cc: tmic Subject: Re: [TMIC] RE: TMIC Membership Directory I didn't know such a thing exists; I would appreciate having one, also. Sorry to butt in, Dalton Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: rn11...@yahoo.com rn11...@yahoo.com Reply-To: rn11...@yahoo.com rn11...@yahoo.com Date: Wednesday, 6 January 2013 7:53 AM To: Judy heyjude48...@aol.com Cc: tmic tmic-list@eskimo.com Subject: Re: [TMIC] RE: TMIC Membership Directory Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 6 Mar 2013 04:53:59 -0800 Jude, You can have mine from 2011. Just let me know your address and I'll send it. Cheryl From: heyjude48...@aol.com heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, March 5, 2013 11:09 PM Subject: [TMIC] RE: TMIC Membership Directory Hi Gang, If there is anyone out there who happens to have an extra TMIC Directory may I please have it? I don't care if it's a few years old. If you could see it in your heart to send it to me I will surely appreciate it. I called sandy Siegel and asked him to send me one but he said that the board asked him not to send them out anymore so I am left without one. I can't seem to access the TMA site. So if you would help me I will be a happy camper. Thank you, Jude Michigan wlEmoticon-smile[1].png
Re: [TMIC] March Birthdays
Great way to spend your birthday!!! Janice From: Gary Thomas Sent: Tuesday, March 05, 2013 9:59 PM To: celr...@aol.com ; patticoole...@gmail.com ; TMIC-LIST@eskimo.com Subject: Re: [TMIC] March Birthdays Thank you very much for the birthday greetings. My birthday is the 30th and I plan to be enroute that day from Michigan (which is now snowy) to sunny (I hope) Georgia, where I will see my grandchildren! Gary - Original Message - From: celr...@aol.com To: patticoole...@gmail.com ; TMIC-LIST@eskimo.com Sent: Sunday, March 03, 2013 9:11 PM Subject: Re: [TMIC] March Birthdays HAPPY BIRTHDAY TO ALL MARCH BABIES!! LOVE TO ALL In a message dated 3/3/2013 11:27:24 A.M. Central Standard Time, patticoole...@gmail.com writes: HAPPY BIRTHDAY TO ALL THE MARCH BABIES. I HOPE YOU ALL HAVE A GREAT DAY! On Sat, Mar 2, 2013 at 11:18 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the March kids! Please send any additions or corrections to tmic-list@eskimo.com. And please join me in remembering Mike Hammond, whose birthday was 3/8, who passed away a few years ago. 3-3 Marsha Scholes (marshab...@comcast.net) 03.05 Bettie Imus (bettie5...@aol.com) 3-7 Sue Mattis (bobsue6...@adelphia.net) 3-15 Sandra Melville (luth...@comcast.net) 3-17 Joy S. (joyst...@aol.com) 3-19 Betty Clark (beecl...@aol.com) 3/24 john h (JOHNLOVESKARAOKE) 3/26 Jane Elrod (celr...@aol.com) 3/30 Gary (gbthomas8...@sbcglobal.net) 3-31 Jan H (jmh1...@sbcglobal.net)
Re: [TMIC]
Okay, you really are anal - but more power to you!Well done – so far. Janice From: Betty Clark Sent: Tuesday, March 05, 2013 8:17 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Just because I am really anal about lists, I've kept a spreadsheet of info that responders have shared (it helps me keep track of who's who since my memory is so bad), and of those who've provided the info, this is what I've gathered: PLACE F M unk. Texas7 4 1 England5 3 1 Tennessee4 2 1 California 6 0 Canada 5 0 New York 4 1 Washington 4 1 Michigan 3 1 New Jersey 2 2 Ohio 2 1 1 Georgia 2 1 Australia1 1 Connecticut 1 1 Delaware 1 1 Illinois 2 0 India 0 1 1 New Zealand 2 0 N. Carolina2 0 Oklahoma 1 1 Pennsylvania 1 1 Wisconsin 2 0 1 male each from: Alabama, Brazil, Hawaii, Holland, Iowa, Kansas, Maine, Nova Scotia, United Arab Emeritus, W. Virginia 1 female each from: Arizona, Florida, Idaho, Indiana, Massachusetts, Missouri, Nevada, Utah For a grand total of 65 women and 32 men (twice as many!), and 5 unknown. I haven't seen any posts indicating a location from any of the other states or countries. If everyone would like to try responding again, maybe we'd get a better picture of what the stats look like... just a thought from the curious. On 2/27/2013 8:09 AM, lynne myers wrote: If you look at the membership directory there are probably at least 100 people in most states. No one seems to have more than the others at a glance, but have to admit I didn't take the time to sit and count them all. -- From: Janice Nichols mailto:jan...@centurytel.net To: I.WHIDDETT mailto:i.whidd...@sky.com Cc: tmic-list@eskimo.com Sent: Tuesday, February 26, 2013 6:07 PM Subject: Re: [TMIC] I couldn’t really tell a leaning toward either sex.I guess TM isn’t particular. Janice From: I.WHIDDETT Sent: Tuesday, February 26, 2013 12:31 PM To: Janice Nichols Cc: mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Thanks for that Janice. Was there a fairly even male/female divide? Iris UK Sent from my iPad On 26 Feb 2013, at 18:05, Janice Nichols jan...@centurytel.net wrote: Okay, fellow TM’ers, here is what I got from new responses. I was really hoping for something to jump out at me as far as same locations and a similar age for being attacked by TM.No such luck. For what it is worth, here it is: LOCATION AGE Washington – 7 12/13/19-5 people New York - 3 20’s - 2 people Michigan - 3 California - 3 30’s - 2 people Texas - 3 40’s - 10 people Missouri - 2 Virginia - 2 50’s - 10 people UK -- 2 60’s - 7 people The rest of the states responding were only “1” each 70’s - 2 people Obviously the older we get, the more susceptible we are to TM. Thanks to all of you for responding. Janice – Missouri
Re: [TMIC] RE: TMIC Membership Directory
Don’t have an extra one, but hope you find one. Janice From: heyjude48...@aol.com Sent: Tuesday, March 05, 2013 10:09 PM To: tmic-list@eskimo.com Subject: [TMIC] RE: TMIC Membership Directory Hi Gang, If there is anyone out there who happens to have an extra TMIC Directory may I please have it? I don't care if it's a few years old. If you could see it in your heart to send it to me I will surely appreciate it. I called sandy Siegel and asked him to send me one but he said that the board asked him not to send them out anymore so I am left without one. I can't seem to access the TMA site. So if you would help me I will be a happy camper. Thank you, Jude Michigan
Re: [TMIC] Baclofen Pump
Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall ; tmic Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Baclofen Pump
Deb, I think I have what your doc’s referred to as a spinal stimulation implant. It really helps cover nerve pain when walking and it seems to give me extra strength in my legs to walk.I really feel it has kept me out of the wheelchair - love it. What is “peripheral” nerve pain? Janice From: Deb Monteleone Sent: Sunday, March 03, 2013 6:47 PM To: 'Janice Nichols' ; 'tmic' Subject: RE: [TMIC] Baclofen Pump Janice, Sorry if you wrote about your nerve implant already but I can’t bring it to mind. Seems to happen a lot to me. What does it do for you? When I went to one pain mgmt. doctor I was told about spinal stimulation (implant) but they said it would not help my peripheral neuropathy pain. Hence moving on to the morphine pump trial. Make it a great day, Deb From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, March 03, 2013 5:27 PM To: Barbara H.; Robert Pall; tmic Subject: Re: [TMIC] Baclofen Pump Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall ; tmic Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Fwd: FW: An extra Ten Commandments O/T
Words to live by.Thank you Janice From: celr...@aol.com Sent: Thursday, February 28, 2013 8:21 PM To: tmic-l...@eskimo.net Subject: [TMIC] Fwd: FW: An extra Ten Commandments O/T -- From: sg...@hotmail.com Sent: 2/28/2013 6:59:34 P.M. Central Standard Time Subj: FW: An extra Ten Commandments Sheila TenEyck -- Layman's Ten . . . . . . . Someone has written these beautiful words. Must read and try to understand the deep meaning of it. They are like the ten commandments to follow in life all the time. 1. Prayer is not a spare wheel that you pull out when in trouble, but it is a steering wheel that directs the right path throughout. 2. So why is a car's windshield so large and the rear view mirror so small? Because our past is not as important as our future. So, look ahead and move on. 3. Friendship is like a book. It takes few seconds to burn, but it takes years to write. 4. All things in life are temporary. If it's going well, enjoy it, that won't last long. If it's going badly, don't worry, that won't last long either. 5. Old friends are gold! New friends are diamonds! If you get a diamond, don't forget the gold! Because to hold a diamond, you always need a base of gold! 6. Often when we lose hope and think this is the end, God smiles from above and says, Relax, sweetheart, it's just a bend, not the end! 7. When God solves your problems, you have faith in His abilities; when God doesn't solve your problems, He has faith in your abilities. 8. A blind person asked St. Anthony, Can there be anything worse than losing eye sight? He replied, Yes, losing your vision! 9. When you pray for others, God listens to you and blesses them; sometimes, when you are safe and happy, remember that someone has prayed for you. 10. Worrying does not take away tomorrow's troubles, it takes away today's peace. If you really enjoy this, please pass to others. It may brighten someone's day. No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.2238 / Virus Database: 2639/5588 - Release Date: 02/07/13 No virus found in this message. Checked by AVG - www.avg.com Version: 2013.0.2897 / Virus Database: 2639/6092 - Release Date: 02/09/13 -- No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.2238 / Virus Database: 2639/5603 - Release Date: 02/14/13 =
[TMIC]
Okay, fellow TM’ers, here is what I got from new responses. I was really hoping for something to jump out at me as far as same locations and a similar age for being attacked by TM.No such luck. For what it is worth, here it is: LOCATION AGE Washington – 7 12/13/19-5 people New York - 3 20’s - 2 people Michigan - 3 California - 3 30’s - 2 people Texas - 3 40’s - 10 people Missouri - 2 Virginia - 2 50’s - 10 people UK -- 2 60’s - 7 people The rest of the states responding were only “1” each 70’s - 2 people Obviously the older we get, the more susceptible we are to TM. Thanks to all of you for responding. Janice – Missouri
Re: [TMIC]
I couldn’t really tell a leaning toward either sex.I guess TM isn’t particular. Janice From: I.WHIDDETT Sent: Tuesday, February 26, 2013 12:31 PM To: Janice Nichols Cc: mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Thanks for that Janice. Was there a fairly even male/female divide? Iris UK Sent from my iPad On 26 Feb 2013, at 18:05, Janice Nichols jan...@centurytel.net wrote: Okay, fellow TM’ers, here is what I got from new responses. I was really hoping for something to jump out at me as far as same locations and a similar age for being attacked by TM.No such luck. For what it is worth, here it is: LOCATION AGE Washington – 7 12/13/19-5 people New York - 3 20’s - 2 people Michigan - 3 California - 3 30’s - 2 people Texas - 3 40’s - 10 people Missouri - 2 Virginia - 2 50’s - 10 people UK -- 2 60’s - 7 people The rest of the states responding were only “1” each 70’s - 2 people Obviously the older we get, the more susceptible we are to TM. Thanks to all of you for responding. Janice – Missouri
[TMIC]
Out of 27 people responding, this is what I came up with. AGE:13 - 1 personSTATE: California – 3 persons 20’s - 2 people Michigan – 3 persons 30’s - 2 people New York area - 3 persons 40’s - 7 people Virginia - 2 persons 50’s - 8 people All the rest of the states were - 1 person 60’s - 7 people 70’s - 1 person UK - 2 people Was disappointed with how few responses there were - was hoping for a better tally.Oh well. Here it is. Janice
Re: [TMIC] Baclofen Pump
Only time will tell you if the decision was right or not. I had the same feelings before I had my nerve implant put in, but it could not have been a better decision. If you do not try it, you would always wonder how much it would have helped you.This way, you will know. Trying things to better our situation is all we can do.I feel you are doing the right thing. After all, you can always have it taken out if it does not work and then you will not spend your time wondering about it. But, from what I have heard of the pump, you probably will do well. Good luck and keep us posted. Janice From: Robert Pall Sent: Saturday, February 16, 2013 6:25 PM To: tmic-list@eskimo.com Subject: [TMIC] Baclofen Pump After doing the trial last week and having really good results, I have decided to go ahead with the Baclofen Pump. I have scheduled an appointment with the surgeon in 2 weeks. Now that I have made the decisioncan anybody tell me why it might be the wrong one? Thanks Rob in New Jersey
Re: [TMIC] 2 year anniversary
Nikki, It will get easier and, yes, I think we all have our moments of being scared.How did TM leave you?What are you able to do and not do - walking, bladder, bowel, spasms of legs and feet, heat sensitive? If you will help us understand your situation, we can start from there and maybe some of us can be of help to you.We all have one or all of these sensations, or lack of, and try to help each other by what we have learned by trial and error, using different drugs, etc. If nothing else, we can give you support to get to a better place than you are now.I felt like you do at about 2 years into TM when I found this website. It has helped me more than I can say.This is a great group of people and they now exactly where you are coming from. Trust us to help you. Janice from Missouri, USA -Original Message- From: Nikki Macleod Sent: Thursday, February 14, 2013 5:31 PM To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Subject: [TMIC] 2 year anniversary This time 2 years ago TM struck overnight whilst I was sleeping, feeling very emotional and tearful and cannot sleep as I think I'm scared I know it sounds silly. Does it get easier? X Sent from my iPad
[TMIC] AGE AND STATE
I am requesting a quick answer from all of you, whether you just read the posts or usually respond to comments, questions, etc. A long time ago, I asked TM’ers to give me the age at which TM struck you. Since then we have added a lot of people to the group and I would really like another tally.Also, would you mind giving the state you were living in when TM struck?I would add these up and figure out what the average age TM struck and what state seems to be most prominent. Thank you. Janice – age 60 – Missouri
Re: [TMIC] Our Memories
Thank you very much!! Janice From: Betty Clark Sent: Saturday, January 26, 2013 6:35 PM To: Janice Nichols Cc: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Our Memories If you've never seen them before, there are many on-line games on gamehouse.com that can help with memory... my personal favorite is Super TextTwist. It is a really good game you can play by yourself. You're given six random letters and have to make as many 3-6 letter words as you can in a given amount of time. They show you how many words of each number of letters can be made and as long as you get at least one of the 6-letter words, even if you don't get the rest, you pass on to the next series of letters. As the clock runs out, it shows you the words you missed, so it helps you learn words (and spelling). It's keeps a running score until you fail to get a 6-letter word, so you play against yourself to see how high a score you can achieve. Here's the link to Super TextTwist: http://www.gamehouse.com/online-games/super-texttwist-online Betty On 1/26/2013 3:18 PM, Janice Nichols wrote: I do have memory problems. Not just forgetting names of things, but situations that happened a week ago, or the day after I see a movie, I forget what it was.Eventually I think of it, but it is scary for my husband to be talking about an incident, and I don’t remember it. We have a card game we play with another couple that is called Quiddler. You start with 3 cards and work up to having 10 cards dealt to you. You make words out of your cards dealt to you or discarded by others. It does make you think and it is very addicting. We love it. Janice From: heyjude48...@aol.com Sent: Friday, January 25, 2013 9:55 PM To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Subject: [TMIC] Our Memories How is your memory these days? Have you experienced memory loss? If so, how does it affect your life? Does your faulty memory affect your life with your loved ones? Memory loss has to do with the myelin sheath. The myelin sheath coats the neurons in the spinal column to cement memories. TM destroys the myelin sheath, so that our memories become clouded or we have no memories at all. The more we repeat things we need to remember, the thicker the layer of myelin forms around the neurons. Brain games such as Scrabble, Seduki, Boggle, Crossword Puzzles,and other games help us to reform the myelin sheath... Any thoughts on this? Many hugs, Jude
[TMIC]
For those of you who have a constipation problem, I read tonite on FB that “Fruiteze” is supposed to be really good. Just thought I would throw that out there. Janice
Re: [TMIC] Families
I was 60 when TM hit - so not much help. Janice -Original Message- From: Nikki Macleod Sent: Thursday, January 31, 2013 4:40 PM To: tmic-list@eskimo.com Subject: [TMIC] Families I am only 25 years old (23) at the time TM hit, I was just wondering if any females had any trouble conceiving, difficult pregnancies etc. just I am really broody. At the time TM hit, me and my partner were trying for a baby. I know it's going to be harder now but people in wheelchairs cope with children. Nikki. Sent from my iPad
Re: [TMIC] Traveling with TM
Nikki - go for comfort!! Janice -Original Message- From: Nikki Macleod Sent: Thursday, January 31, 2013 4:16 PM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Traveling with TM Thanks Janice I will let you all know how it goes. My biggest concern has been my outfit - typical woman. Nikki. Sent from my iPad On 31 Jan 2013, at 05:09, Janice Nichols jan...@centurytel.net wrote: Nikki, You need to list the fears that you have taking this trip. Then put the answer down on paper that covers the situation if it should occur. When you see the answers to your concerns, it will help and you can pack accordingly. I have always heard from those in wheelchairs that you are well taken care of in airports.You just need to give them advanced notice of when you will be there and which terminal you will need next. Some of the others will probably weigh in on this that have flown. I know this sounds simplistic, but it does make sense. Good luck and let us know how everything went. Janice -Original Message- From: Nikki Macleod Sent: Wednesday, January 30, 2013 5:04 PM To: Pat Voorheis Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Traveling with TM Since TM hit me on the 15th Feb 2011 I have never travelled anywhere apart from different hospitals but I am invited to my sister-in-law's wedding on the 16th Feb and we are stopping overnight at the hotel so this is a big step especially as it'll only be TM's 2nd 'birthday' and I had a total meltdown last year. I am hoping this will keep me focused, make me a bit more confident and keep my head out my arse. I am terrified of getting on a plane now I'm in a wheelchair - I guess it's the fear of the unknown but we are eager to go abroad but I think I need to keep taking baby steps in the right direction. Thinking of a log cabin with a hot tub next (and that way we can take our dogs). Nikki. Sent from my iPad On 29 Jan 2013, at 00:19, Pat Voorheis pjv1...@chartermi.net wrote: I haven't been to Nashville. I think the climate will be perfect in March. Anything you do to Kick TM behind you brings confidence. Patti On Jan 28, 2013, at 9:24 AM, Janice Nichols jan...@centurytel.net wrote: I am getting braver too - going to Nashville this March for 10 days. Still with some reservations, really looking forward to it. Janice -Original Message- From: Pat Voorheis Sent: Monday, January 28, 2013 7:53 AM To: tmic Subject: [TMIC] Traveling with TM My husband and I have taken several trips since TM hit me nine years ago. Traveling started after I read a proverb. Hope deferred makes the heart sick. I wrote in the margin of my Bible, It's time to say yes to Jim's Pacific Ocean Highway 101 trip. The whole idea petrified me and the biggest what if was - what if TM hits again while I'm away from home. You could list your greatest ten fears and figure I had many of them too. We made as many adjustments as we could and flew from Michigan to Seattle, Washington, with small, small suitcases for a two week vacation. We drove from Seattle to San Diego, California. Then flew back home. I didn't have a TM relapse. I didn't loose my meds. I didn't die from riding so long. We have great memories of that trip. Another summer we took our boat on a week's vacation. I didn't fall overboard, but We had to take my brother so he could take over my usual duties. Darn TM. We had to admit that TM changed me and our finances too much to be able to maintain our boat so we sold it (at a loss). Darn TM. We waited a year and bought a used motor home and set out on a three week cross country trip to the Grand Canyon and Yellowstone National Park. I didn't fall off a cliff or get eaten by a grizzly We've taken other trips since and each one has built confidence. Yes they were tiring. Yes I was in pain. I wished to be in my own bed, didn't want to ride one more mile, or walk one more step. However, until writing this that's not what I remembered about those trips. They were good times, with good memories and lots of pictures to prove it. A lot of TMers have traveled and helped me prepare. I'm glad we did it! Patti - Michigan
Re: [TMIC] Traveling with TM
Nikki, You need to list the fears that you have taking this trip. Then put the answer down on paper that covers the situation if it should occur.When you see the answers to your concerns, it will help and you can pack accordingly. I have always heard from those in wheelchairs that you are well taken care of in airports.You just need to give them advanced notice of when you will be there and which terminal you will need next. Some of the others will probably weigh in on this that have flown. I know this sounds simplistic, but it does make sense.Good luck and let us know how everything went. Janice -Original Message- From: Nikki Macleod Sent: Wednesday, January 30, 2013 5:04 PM To: Pat Voorheis Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Traveling with TM Since TM hit me on the 15th Feb 2011 I have never travelled anywhere apart from different hospitals but I am invited to my sister-in-law's wedding on the 16th Feb and we are stopping overnight at the hotel so this is a big step especially as it'll only be TM's 2nd 'birthday' and I had a total meltdown last year. I am hoping this will keep me focused, make me a bit more confident and keep my head out my arse. I am terrified of getting on a plane now I'm in a wheelchair - I guess it's the fear of the unknown but we are eager to go abroad but I think I need to keep taking baby steps in the right direction. Thinking of a log cabin with a hot tub next (and that way we can take our dogs). Nikki. Sent from my iPad On 29 Jan 2013, at 00:19, Pat Voorheis pjv1...@chartermi.net wrote: I haven't been to Nashville. I think the climate will be perfect in March. Anything you do to Kick TM behind you brings confidence. Patti On Jan 28, 2013, at 9:24 AM, Janice Nichols jan...@centurytel.net wrote: I am getting braver too - going to Nashville this March for 10 days. Still with some reservations, really looking forward to it. Janice -Original Message- From: Pat Voorheis Sent: Monday, January 28, 2013 7:53 AM To: tmic Subject: [TMIC] Traveling with TM My husband and I have taken several trips since TM hit me nine years ago. Traveling started after I read a proverb. Hope deferred makes the heart sick. I wrote in the margin of my Bible, It's time to say yes to Jim's Pacific Ocean Highway 101 trip. The whole idea petrified me and the biggest what if was - what if TM hits again while I'm away from home. You could list your greatest ten fears and figure I had many of them too. We made as many adjustments as we could and flew from Michigan to Seattle, Washington, with small, small suitcases for a two week vacation. We drove from Seattle to San Diego, California. Then flew back home. I didn't have a TM relapse. I didn't loose my meds. I didn't die from riding so long. We have great memories of that trip. Another summer we took our boat on a week's vacation. I didn't fall overboard, but We had to take my brother so he could take over my usual duties. Darn TM. We had to admit that TM changed me and our finances too much to be able to maintain our boat so we sold it (at a loss). Darn TM. We waited a year and bought a used motor home and set out on a three week cross country trip to the Grand Canyon and Yellowstone National Park. I didn't fall off a cliff or get eaten by a grizzly We've taken other trips since and each one has built confidence. Yes they were tiring. Yes I was in pain. I wished to be in my own bed, didn't want to ride one more mile, or walk one more step. However, until writing this that's not what I remembered about those trips. They were good times, with good memories and lots of pictures to prove it. A lot of TMers have traveled and helped me prepare. I'm glad we did it! Patti - Michigan
Re: [TMIC] Standing Frame
Cody, that sounds like a great device to use.I love how you increased your time spent in it. Janice From: Cody Sent: Tuesday, January 29, 2013 10:16 PM To: heyjude48...@aol.com ; tmic-list@eskimo.com Subject: [TMIC] Standing Frame I have had a standing frame glider since I was first paralyzed with TM from the chest down in 2001. I use it almost everyday. I like to stand and watch TV especially football or Jeopardy J. I remember the first time I got up in it, I could only stand for about 10 minutes because my blood pressure would drop and I would get light headed.. Now I stand for over an hour with no problems. I have had no recovery but I do think it helps keep me healthier especially my circulation. The link below will take you to the website where you can see my standing frame.….Cody in Austin http://www.easystand.com/
Re: [TMIC] Traveling with TM
I am getting braver too - going to Nashville this March for 10 days. Still with some reservations, really looking forward to it. Janice -Original Message- From: Pat Voorheis Sent: Monday, January 28, 2013 7:53 AM To: tmic Subject: [TMIC] Traveling with TM My husband and I have taken several trips since TM hit me nine years ago. Traveling started after I read a proverb. Hope deferred makes the heart sick. I wrote in the margin of my Bible, It's time to say yes to Jim's Pacific Ocean Highway 101 trip. The whole idea petrified me and the biggest what if was - what if TM hits again while I'm away from home. You could list your greatest ten fears and figure I had many of them too. We made as many adjustments as we could and flew from Michigan to Seattle, Washington, with small, small suitcases for a two week vacation. We drove from Seattle to San Diego, California. Then flew back home. I didn't have a TM relapse. I didn't loose my meds. I didn't die from riding so long. We have great memories of that trip. Another summer we took our boat on a week's vacation. I didn't fall overboard, but We had to take my brother so he could take over my usual duties. Darn TM. We had to admit that TM changed me and our finances too much to be able to maintain our boat so we sold it (at a loss). Darn TM. We waited a year and bought a used motor home and set out on a three week cross country trip to the Grand Canyon and Yellowstone National Park. I didn't fall off a cliff or get eaten by a grizzly We've taken other trips since and each one has built confidence. Yes they were tiring. Yes I was in pain. I wished to be in my own bed, didn't want to ride one more mile, or walk one more step. However, until writing this that's not what I remembered about those trips. They were good times, with good memories and lots of pictures to prove it. A lot of TMers have traveled and helped me prepare. I'm glad we did it! Patti - Michigan
Re: [TMIC] Fwd: [QUAD-L] Standing wheelchair' anyone have one ? If so pros and cons?
The only thing I can think of is my walker with a place to sit. Janice From: heyjude48...@aol.com Sent: Monday, January 28, 2013 4:48 PM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: [QUAD-L] Standing wheelchair' anyone have one ? If so pros and cons? I got this from the TM quad list. They're talking about standing wheelchairs. Do any of you have one. I want one real bad. Jude -- From: davekrehb...@earthlink.net To: wheelch...@aol.com, quad-l...@eskimo.com Sent: 1/28/2013 1:41:39 P.M. Eastern Standard Time Subj: RE: [QUAD-L] Standing wheelchair' anyone have one ? If so pros and cons? I definitely plan to get a standing wheelchair. Before my accident five years ago, I was 6 feet tall. These days, I'm looking up at everybody. I did some therapy in a standing frame at a local rehab facility, and it was an incredibly emotional experience. The world looks like an entirely different place when you're standing at your traditional height. I understand the standing frames and standing wheelchairs have many other benefits: strengthening bones, increasing flexibility, assisting with digestion, and other benefits related to blood pressure. My plan is to try to raise some funds to build a shed, so that I can get a standing frame or standing wheelchair as well as a generator. I absolutely concur that you need to be evaluated properly. The physical therapist did not start me in a standing frame... they started with a tilt table. Raising your head so far up in the air is a challenge when you been sitting down and lying down for so long. But my insurance covers this... and I hope yours does too. Take care, Dave Krehbiel From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Friday, January 25, 2013 9:59 AM To: shellbell5...@aim.com; quad-l...@eskimo.com Subject: Re: [QUAD-L] Standing wheelchair' anyone have one ? If so pros and cons? I personally hope that in everyone's life, they have the opportunity to try out a standing wheelchair. Some of the benefits can be overwhelming. However, I usually advise that a Standing Evaluation, with an Occupational Therapist to determine if and how long one can stand, vertical. Some with low blood pressure may pass out with a quick stand. Some can not operate a manual stander because of strength issues. A motorized stander might work better then a manual unit. By all means, if you meet the perimeters... Go For It. Best Wishes In a message dated 1/23/2013 9:41:49 P.M. Central Standard Time, shellbell5...@aim.com writes: Hi to everyone, So, long story short, UCP agreed to either make my kitchen accessible OR purchase A standing wheelchair.I have been looking at the standing wheelchairs and there is even one That is manual. Are they much bigger than a regular electric chair ? and if ya have one what are your thoughts and or experiences and the pluses or minuses? ? (I understand the benefit ti standing Ii stand daily in my standing frame, oh and sores are not a issue) . thanks everyone!!! N shelly C6C7 incomplete Sent from my iPad
Re: [TMIC] Tonight, Today, Tomorrow
I don’t have more pain, but I can really get light headed, almost faint like. No fun. If I am going to have a drink – and I don’t drink often or have strong drinks – I really have to time my meds accordingly. Sometimes I just don’t have a drink. Janice From: Betty Clark Sent: Saturday, January 26, 2013 6:09 PM To: Janice Nichols Cc: Linda Egli ; tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I don't know it affects you, but whenever I have any alcohol, it interferes with the effectiveness of my pain medication. I was never a lush - a glass of wine or a beer occasionally, or a mixed drink or champagne at parties and holidays - but ever since TM, I can't drink anything without the pain breaking through way sooner than it should. I tried several times thinking it was just a coincidence or I was overly fatigued prior to the drink, but it happens every time no matter what. Kinda puts a damper on celebrations now, but I've resigned myself to NOT imbibe - it just isn't worth the discomfort! Betty On 1/26/2013 2:41 PM, Janice Nichols wrote: Linda, I have a good friend who has tremors in his hands too.You are right, he says a good stiff drink makes a difference with his tremors! You are making the best of what TM has done to you and that is saying a lot!! Keep it up and keep responding. Janice From: Linda Egli Sent: Saturday, January 26, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I lost a wonderful job working in a local Public Health Department. I had worked there for 12 years loved every minute of the job. I went to the doctor with severe numbness loss of motor function, I then saw a neurologist after a 36 years as a nurse, my career was over. I left work that day was never able to return - very hard to deal with probably took 2-3 yeas to finally accept. I miss dancing; I was not the greatest but I enjoyed it. The main thing I miss now is only having partial use of my hands. About 2 years into TM I developed essential tremors in both hands (especially the right hand I am right handed). I take Primidone but it really doesn't help a lot. The main thing that helps the tremors is alcohol I can't drink every 4-6 hours, (but some days I try). Between the severe numbness tremors, using my hands can be difficult. I had always enjoyed sewing, needlework, crocheting, scrap booking, just anything involving arts crafts. I got rid of 95% of my craft sewing items because I could not stand not being able to use them (I had a whole room for crafts). I have found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a little crocheting if I keep it at 15 -20 minutes. I try to be positive as much as possible, knowing there are many people with much worse difficulty than me. On a good note, I have a wonderful supportive husband (helps with laundry tries to help cooking), good medical coverage, am able to afford someone in to help with the house 3 days weekly. Life is what you make of it. Linda E. -- From: john snodgrass mailto:jcs...@yahoo.com To: transverse myelitis mailto:tmic-list@eskimo.com Sent: Saturday, January 26, 2013 5:44 AM Subject: Re: [TMIC] Tonight, Today, Tomorrow i was a work-a-holic i sure miss that! -- From: mailto:heyjude48...@aol.com mailto:heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a demanding person because of TM. I hate that I've had to give up driving and remember how it used to feel heading down the highway with my arm resting on the window turned all the way down. Always remember that today could be potentially the best day of your life. Never take today for granted. When you wake up each morning remember to thank God for giving you another day. Always end the day with a positive thought. No matter how hard thing were, Tomorrow is a fresh opportunity to make it better. (unknown)
Re: [TMIC] Tonight, Today, Tomorrow
If there was a “butting in”, I would have been bannned from here long ago!! Janice From: heyjude48...@aol.com Sent: Saturday, January 26, 2013 6:35 PM To: xbeecla...@gmail.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I hope it's ok to butt in, I haven't had a drink since I first tried one shortly after coming down with TM. It knocked me for a loop! Almost fell out of my chair, threw up for hours and said never again! I was never a big drinker, but that one drink did it for me! Jude In a message dated 1/26/2013 7:09:56 P.M. Eastern Standard Time, xbeecla...@gmail.com writes: I don't know it affects you, but whenever I have any alcohol, it interferes with the effectiveness of my pain medication. I was never a lush - a glass of wine or a beer occasionally, or a mixed drink or champagne at parties and holidays - but ever since TM, I can't drink anything without the pain breaking through way sooner than it should. I tried several times thinking it was just a coincidence or I was overly fatigued prior to the drink, but it happens every time no matter what. Kinda puts a damper on celebrations now, but I've resigned myself to NOT imbibe - it just isn't worth the discomfort! Betty On 1/26/2013 2:41 PM, Janice Nichols wrote: Linda, I have a good friend who has tremors in his hands too.You are right, he says a good stiff drink makes a difference with his tremors! You are making the best of what TM has done to you and that is saying a lot!!Keep it up and keep responding. Janice From: Linda Egli Sent: Saturday, January 26, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, Tomorrow I lost a wonderful job working in a local Public Health Department. I had worked there for 12 years loved every minute of the job. I went to the doctor with severe numbness loss of motor function, I then saw a neurologist after a 36 years as a nurse, my career was over. I left work that day was never able to return - very hard to deal with probably took 2-3 yeas to finally accept. I miss dancing; I was not the greatest but I enjoyed it. The main thing I miss now is only having partial use of my hands. About 2 years into TM I developed essential tremors in both hands (especially the right hand I am right handed). I take Primidone but it really doesn't help a lot. The main thing that helps the tremors is alcohol I can't drink every 4-6 hours, (but some days I try). Between the severe numbness tremors, using my hands can be difficult. I had always enjoyed sewing, needlework, crocheting, scrap booking, just anything involving arts crafts. I got rid of 95% of my craft sewing items because I could not stand not being able to use them (I had a whole room for crafts). I have found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a little crocheting if I keep it at 15 -20 minutes. I try to be positive as much as possible, knowing there are many people with much worse difficulty than me. On a good note, I have a wonderful supportive husband (helps with laundry tries to help cooking), good medical coverage, am able to afford someone in to help with the house 3 days weekly. Life is what you make of it. Linda E. From: john snodgrass mailto:jcs...@yahoo.com To: transverse myelitis mailto:tmic-list@eskimo.com Sent: Saturday, January 26, 2013 5:44 AM Subject: Re: [TMIC] Tonight, Today, Tomorrow i was a work-a-holic i sure miss that! From: mailto:heyjude48...@aol.com mailto:heyjude48...@aol.com To: tmic-list@eskimo.com Cc: heyjude48...@aol.com Sent: Friday, January 25, 2013 10:32 PM Subject: [TMIC] Tonight, Today, Tomorrow Hi everybody, Tonight, sitting here doing nothing, I'm wondering how Transverse Myelitis has affected your life. What has it stolen from you. Maybe everything, maybe nothing. I'm sure it is a personal thing. Some people choose to focus on life and believe that everything in life happens for a reason. I love life and refuse to let TM steal one minute. Life is made up of many joyous moments and I choose to focus on those moments, not TM. Because of my love for life, I refuse to feel sorry for myself. I've learned to be outspoken about my TM and I've become a demanding person because of TM. I hate that I've had to give up driving and remember how it used to feel heading down the highway with my arm resting on the window turned all the way down. Always remember that today could be potentially the best day of your life. Never take today for granted. When you wake up each morning remember to thank God for giving you another day. Always end the day with a positive
Re: [TMIC] Tonight, Today, tomorrow
I am so sorry.At least you have someone to be really close to.When you have the foot surgery, please let us know how you are doing. Janice -Original Message- From: Nikki Macleod Sent: Sunday, January 27, 2013 11:40 AM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Tonight, Today, tomorrow I was supposed to get married not long after TM hit so it was all cancelled. I have a very loving partner who I have been with since I was 16 years old, he's my rock and so supportive. We had to move from our home to a bungalow so when we did this we moved closer to my family and friends. Am not currently receiving PT but do my own exercises on my arms but they are very weak. I am waiting for an operation on my feet as I have severe foot drop and other deformities. Nikki Sent from my iPad On 26 Jan 2013, at 23:10, Janice Nichols jan...@centurytel.net wrote: I really hate that you were so young when TM hit.Are you married? Do have any family around you?Are you doing any physical therapy? Janice -Original Message- From: Nikki Macleod Sent: Saturday, January 26, 2013 2:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Tonight, Today, tomorrow I feel as though TM has robbed me of all of my hopes and dreams. I'm 25 yrs old (23 when TM hit) and I had my dream job and had just graduated from uni. I miss my job terribly I worked in early years and it was my passion. I miss the interaction I had with the children, parents, colleagues, and basically the big wide world. I loved going to the gym but I am now paralysed from the shoulders down so this is now also a no go area. I loved the buzz it gave you and found it relaxing. I didn't actually know how much I'd miss driving, managing my toileting needs and how it had robbed me of all of my independence, confidence and self-esteem and send me spiralling into a pit of deep dark depression. But, I am slowly regaining my confidence, setting up fundraising days for my new wheelchair and I have started to write a book. TM will only beat you if you let it!! Sent from my iPad
Re: [TMIC] What's Been Stolen . . .
Janet, you say you work. What do you do? I am s glad that I was retired when TM hit. Don’t think I could work with TM. Janice From: Janet Dunn Sent: Sunday, January 27, 2013 2:50 PM To: tmic-list@eskimo.com Subject: [TMIC] What's Been Stolen . . . I haven't actually thought about the answer to this question - because like many of you - it has the potential to make me angry, depressed, frustrated, and the list goes on. I am one of the walking wounded - I can and do work, some weeks 38 hours and others 20 - depends on fatigue, pain - you know the factors. What I enjoy reading and learning from all of you is that I am not alone. That the cold feet, hot feet, burning feet, banding, the inability to concentrate, or have a drink, the sexual issues, the bladder and bowel issues, the fatigue, the pain, the never knowing whether I need a sweater or a fan, all of those things and more - I am not alone. Even though I am a walking wounded, I am not alone. And for that I so appreciate all of you. I appreciate that no topic is off limits, whether it is about intercourse or digital elimination, or just a plain bad day, or hallelujah even a good day - I am not alone. Even when I think I am, I am not - and thank you all so much for that. Yesterday where I live it was +1 celcius, today it is -20 celcius with a fierce wind chill making it feel like -29 celcius. That 30 degree temperature change plays havoc on my legs - and that is an understatement. Today is a lay low and stay warm day - trust me! Janet
Re: [TMIC] Re: Subscribe
Lucky/smart girl!! Janice From: Deb Monteleone Sent: Saturday, January 26, 2013 12:07 PM To: 'Pat Cooley' ; heyjude48...@aol.com Cc: jan...@centurytel.net ; tmic-list@eskimo.com Subject: RE: [TMIC] Re: Subscribe I just had Shingles this last Labor Day. Noticed raised bumps on my stomach, left of the midline, around to the spine. PA didn’t mention shingles, next day, Saturday went to the emergency room as my husband and I thought it was shingles and know the importance of getting the medication early. Thank God, I received the medicine even though it was at the end of the timeframe but it definitely lessened the attack. Felt some pain, woke me up a few nights, but between the early intervention and the nerve pain meds (Neurontin) I take, it wasn’t really that bad or long. Make it a great day, Deb From: Pat Cooley [mailto:patticoole...@gmail.com] Sent: Friday, January 25, 2013 10:20 AM To: heyjude48...@aol.com Cc: jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - Wisconsin On Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote: I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. Jude, Michigan In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes: For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really looking forward to our new future.At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM.I had not been sick at all for a long time before TM either.I think it is like MS or any other disease like that - it hits when it hits. For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems. Janice From: Robert Pall Sent: Wednesday, January 23, 2013 12:56 PM To: heyjude48...@aol.com ; i.whidd...@sky.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: Subscribe Thanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is pertinent toTM? Love you, Jude In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time, i.whidd...@sky.com writes: Hi Jude I've always wondered if I somehow snuk in under the radar of TMIC. When I was diagnosed with TM 3 1/2 yrs ago it was all new and very frightening and I had very little help or info
Re: [TMIC] tm umbra
I know there are a very few of us that will get hit with TM twice – really sorry about that, but look what a fighter you are!! You need to be proud of what you have accomplished.I use a cane and was paralyzed from the shoulder blades down. Love my cane!! Your subject was “tm and umbra”.What is the “umbra”? Janice From: bob Sent: Saturday, January 26, 2013 2:39 PM To: tmic Subject: [TMIC] tm umbra igot both the day i entered the hosp. 4/1/2004 was paralized from the waist down for a week after that started theropy spent a month in the hosp. 2006 was paralized again spent a month in health south as a in patient got up and using a cane thats where i am now
