Re: [TMIC] I'm back!
Hello Jeron, I'm so glad that you made it home safely and I'm sure that your wife is happy to be spending time with you again. A journey to So. Africa with her sounds marvelous. Enjoy, whatever you do! I usually answer messages offline, directly, person to person. This time I decided to do it on list. I guess after all of your inner thoughts of wanting to experience life again as you had known it, you also found your heart. One never knows entirely what to expect when traveling, you cannot tell ahead of time what kinds of experiences you'll encounter or how you'll handle them when you do, especially with TM. I think that you were meant to meet Christa - she and her family needed some help and you were able to reach out to them and help get the ball rolling for them. I only hope that Christa will get the proper medical care that she needs and that she'll have a decent recovery. It always has saddened my heart when I hear or think of children getting diseases or syndromes that affect their lives and prevent them from being the active and healthy children that they deserve to be. Hugs, Barbara A in Auburn CA -Original Message- From: j ra rumc...@hotmail.com To: Transverse Myelytis tmic-list@eskimo.com Sent: Mon, Jul 5, 2010 6:40 am Subject: [TMIC] I'm back! Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now. =
[TMIC] RE: tmic-digest Digest V2010 #283
re baclofin. I presently take 30 mg. of baclofin twice a day. I spoke numerous times to my neuro re dosage. I even spoke to him about having a balofin pump installed. to answer the first part. baclofin has serious side effect especially damage to the liver. the pump was not recommended due to problems with infections. he suggested that my dosage is the max he can prescribe. here in montreal we are having a severe heat wave. not seen since august of 2007. the temp will be around 85-89 with the humidex around 105 for the rest of the week. one thing about my gorgeous body ( just kidding) is I have little control of my body temp. it could be minus 25 degrees celcious and i am hot., sometimes at night when I want to cuddle with my wife. I feel warm only to be told move over you are freezing to the touch. so be it. her lost . we with TM live with all sorts of challenges. like a box of chocolates. Every day is different. makes life exciting (ya right). that is one reason i enjoy this group. I am ecouraged by it and am able to encourage others to persevere. Have a great day Gerry Date: Tue, 6 Jul 2010 02:13:22 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #283 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 283 Today's Topics: Re: [TMIC] re walking with a cane [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Pieter and Heather pieterheather ] Re: [TMIC] I'm back! [ Lori Biehler lbieh...@earthlink. ] [TMIC] Sativex[ Regina Rummel regina...@sbcglobal. ] --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:43:52 -0500 From: jan...@centurytel.net To: suret...@sympatico.ca; tmic-list@eskimo.com Subject: Re: [TMIC] re walking with a cane Gerry, are you not allowed enough baclofen to control the spasms? I use that too, and it took a while to get the right amount to work, but I really like it. Of course, I realize we are all different and can tolerate only so much. I would talk to your doc and see what can be done with the baclofen. I also would HATE your weather. My body does not tolerate heat, especially with not having fans going in the rooms I am in. So, we keep the temp low, and have ceiling fans in every room. Hope you get improvement. I had to bug my doc several times for amount changes in meds to get as comfortable as I am. Hope you can too - let me know. Janice From: Gerry Surette Sent: Monday, July 05, 2010 7:49 AM To: tmic-list@eskimo.com Subject: [TMIC] re walking with a cane I too have severe nerve pain whether I walk do chores or whatever. I take gabapentin ; for nerve pain xanaflex for spasticity and baclofen the combination helps ne survive without the zanaflex i have trouble putting one foot ahead of the other, it feels like i am pulling a 30 lb. ball with every step. I too walk with a cane and use the walls for balance but outside i use a walker with a seat as I have to sit down after a few steps due to spasms. but i keep perserving as they say no pain no gain Gerry in plus 105 degrees with the humidex in montreal --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:50:30 -0500 From: jan...@centurytel.net To: rumc...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] I'm back! Jeron, You made my day!!!Ever think you were sent to Trinidad for a reason? Your goodness and caring in reaching out to another has paid off tremendously - both for you and Christa. You are my kind of people! Janice From: j ra Sent: Monday, July 05, 2010 8:40 AM To: Transverse Myelytis Subject: [TMIC] I'm back! Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family
[TMIC] Fwd: Illuminated sand table
---BeginMessage--- I'm sending this to you because I think you really appreciate art. This is so beautiful, it made me cry. Read and download...it's awesome...it will keep you entranced! -Original Message- From: emerald128 emerald...@aol.com To: I1t2travel i1t2tra...@aol.com; patt02 pat...@zoominternet.net; mcbodnar mcbod...@msn.com; babushka72944 babushka72...@aol.com; Reneee16 renee...@aol.com; beryl316 beryl...@aol.com; alanacost alanac...@yahoo.com; steelers608 steelers...@hotmail.com; debray518 debray...@sbcglobal.net; curlbabeqt curlbab...@yahoo.com; plk2110 plk2...@zoominternet.net; loglw lo...@aol.com; jm209nd jm20...@sbcglobal.net; mlm1450 mlm1...@yahoo.com; beckymccarty beckymcca...@mac.com; honeybunny6973 honeybunny6...@aol.com; streets1114 streets1...@aol.com; cheffy311 cheffy...@aol.com; Bjoml01 bjom...@aol.com; glpinky glpi...@mchsi.com; MrP2256 mrp2...@aol.com; reddfoxx1 reddfo...@hotmail.com; LEGS9160 legs9...@aol.com; louern65 louer...@zoominternet.net; jrococi jroc...@itt-tech.edu; jrosenbu jrose...@netdotcom.com; ross6294 ross6...@sbcglobal.net; ChicksDigHockey chicksdighoc...@aol.com Sent: Thu, Jul 1, 2010 8:24 am Subject: Fwd: Illuminated sand table THIS IS AWESOME! -Original Message- From: kollarbe...@aol.com To: barasan...@aol.com; billnjoyce...@sbcglobal.net; spu...@att.net; darkangel28...@yahoo.com; yse3...@aol.com; emerald...@aol.com; j.bobby1...@sbcglobal.net; jphviz...@yahoo.com; lin7...@aol.com; molk...@aol.com; napca...@att.net Sent: Thu, Jul 1, 2010 7:19 am Subject: Fwd: Illuminated sand table Richie Rich -Original Message- From: jegiba1...@aol.com To: kollarbe...@aol.com Sent: Wed, Jun 30, 2010 8:04 pm Subject: Fwd: Illuminated sand table -Original Message- From: jpf31930 jpf31...@aol.com To: jegiba1038 jegiba1...@aol.com Sent: Wed, Jun 30, 2010 1:06 pm Subject: Fwd: Illuminated sand table -Original Message- From: paul.slo...@zoominternet.net paul.slo...@zoominternet.net To: bjslo...@aol.com; caroll0...@yahoo.com; chris.slo...@erac.com; Tiffan y cslo...@att.net; Diana Slovan dslo...@gmail.com; gregh...@verizon.net; Shannon Lyons innovat...@gmail.com; jayedun...@sbcglobal.net; Bud Flanagan jpf31...@aol.com; Jim Slovan jslo...@roadrunner.com; Jacl Skubick jsps...@gmail.com; mgnl...@gmail.com; Michael Slovan mikeslo...@gmail.com; mlb42...@zoominternet.net; pezzu...@comcast.net; pys1...@yahoo.com; ras...@yahoo.com; rslo...@yahoo.com; teddo...@aol.com Sent: Tue, Jun 29, 2010 3:47 pm Subject: Fwd: FW: Illuminated sand table - Original Message - From: Betty Hudspeth rhudspe...@hotmail.com To: Anna Mae Laverty am3...@aol.com, bakerman...@hotmail.com, Blanche Hirsch honeyblanche2...@yahoo.com, Bob Joyce Hudspeth r_hudsp...@bellsouth.net, Bob Richardson rakron...@aol.com, Bonnie Kahl sashalynn1...@yahoo.com, Candy Adams awesome...@hotmail.com, CHARLES P MALSOM mamal...@verizon.net, Dean Skinner deanskin...@tampabay.rr.com, Dot Goodrick do...@roadrunner.com, gerry.thoma...@gmail.com, Gloria Stoner kwn...@roadrunner.com, Gwyn Dubel mdube...@gmail.com, holcomb...@yahoo.com, Mary Ann (Becht) Griffith skimo...@gmail.com, Mary Yost maryyo...@yahoo.com, Nancy Barretta nancy_barre...@yahoo.com, Paul Slovan paul.slo...@zoominternet.net, Richard Johns ricjo...@comcast.net, Rose Stang rosestang1...@yahoo.com Sent: Mon 28/06/10 11:25 AM Subject: Fwd: FW: Illuminated sand table Date: Sun, 27 Jun 2010 18:39:48 -0700 From: kahlr...@yahoo.com Subject: Fw: Illuminated sand table To: bobkah...@verizon.net; kenny8b...@hotmail.com; carrie...@yahoo.com; countr...@roadrunner.com; hollydor...@yahoo.com; rhudspe...@hotmail.com; wcfohudsp...@aol.com; akahl2...@yahoo.com; maryb...@gmail.com; lmatc...@verizon.net; sdk...@hotmail.com Ron --- On Sun, 6/27/10, R F KENNEDY wrote: From: R F KENNEDY Subject: Fw: Illuminated sand table To: ron kahl Cc: warren Joan Cracknell , robinb5073 , racing8812 dick blood , mwoodyard , LLOYD PAULSON , James Kramer Jr. , AnnMarie , bkelch1 , BRUCE CHERYL WOODS , Tom and Sylvia Date: Sunday, June 27, 2010, 8:34 PM .Subject: Illuminated sand table Read the entire introduction then watch the magic created by this young lady since the audio is in Russian. This video shows the winner of 2009's Ukraine 's Got Talent, Kseniya Simonova, 24, drawing a series of pictures on an illuminated sand table showing how ordinary people were affected by the German invasion during World War II. Her talent, which admittedly is a strange one, is mesmeric to watch. The images, projected onto a large screen, moved many in the audience to tears and she won the top prize of about $75,000. She begins by creating a scene showing a couple sitting holding hands on a bench under a starry sky, but then warplanes appear and the happy scene is obliterated... It is replaced by a woman's face
Re: [TMIC] RE: tmic-digest Digest V2010 #283
Like Gerry's news, the high temps and humidity in Michigan have made my TM body miserable. Within minutes of going outside my skin feels like it is on fire, my legs feel like petrified wood, my muscles spasm and every joint hurts. TM won yesterday and today - and it hurt. I'm looking for a better piece of chocolate. Patti - Michigan Gerry Surette suret...@sympatico.ca wrote: re baclofin. I presently take 30 mg. of baclofin twice a day. I spoke numerous times to my neuro re dosage. I even spoke to him about having a balofin pump installed. to answer the first part. baclofin has serious side effect especially damage to the liver. the pump was not recommended due to problems with infections. he suggested that my dosage is the max he can prescribe. here in montreal we are having a severe heat wave. not seen since august of 2007. the temp will be around 85-89 with the humidex around 105 for the rest of the week. one thing about my gorgeous body ( just kidding) is I have little control of my body temp. it could be minus 25 degrees celcious and i am hot., sometimes at night when I want to cuddle with my wife. I feel warm only to be told move over you are freezing to the touch. so be it. her lost . we with TM live with all sorts of challenges. like a box of chocolates. Every day is different. makes life exciting (ya right). that is one reason i enjoy this group. I am ecouraged by it and am able to encourage others to persevere. Have a great day Gerry Date: Tue, 6 Jul 2010 02:13:22 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #283 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest DigestVolume 2010 : Issue 283 Today's Topics: Re: [TMIC] re walking with a cane [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Janice Nichols jan...@centurytel ] Re: [TMIC] I'm back! [ Pieter and Heather pieterheather ] Re: [TMIC] I'm back! [ Lori Biehler lbieh...@earthlink. ] [TMIC] Sativex[ Regina Rummel regina...@sbcglobal. ] --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:43:52 -0500 From: jan...@centurytel.net To: suret...@sympatico.ca; tmic-list@eskimo.com Subject: Re: [TMIC] re walking with a cane Gerry, are you not allowed enough baclofen to control the spasms? I use that too, and it took a while to get the right amount to work, but I really like it. Of course, I realize we are all different and can tolerate only so much. I would talk to your doc and see what can be done with the baclofen. I also would HATE your weather. My body does not tolerate heat, especially with not having fans going in the rooms I am in. So, we keep the temp low, and have ceiling fans in every room. Hope you get improvement. I had to bug my doc several times for amount changes in meds to get as comfortable as I am. Hope you can too - let me know. Janice From: Gerry Surette Sent: Monday, July 05, 2010 7:49 AM To: tmic-list@eskimo.com Subject: [TMIC] re walking with a cane I too have severe nerve pain whether I walk do chores or whatever. I take gabapentin ; for nerve pain xanaflex for spasticity and baclofen the combination helps ne survive without the zanaflex i have trouble putting one foot ahead of the other, it feels like i am pulling a 30 lb. ball with every step. I too walk with a cane and use the walls for balance but outside i use a walker with a seat as I have to sit down after a few steps due to spasms. but i keep perserving as they say no pain no gain Gerry in plus 105 degrees with the humidex in montreal --Forwarded Message Attachment-- Date: Mon, 5 Jul 2010 11:50:30 -0500 From: jan...@centurytel.net To: rumc...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] I'm back! Jeron, You made my day!!!Ever think you were sent to Trinidad for a reason? Your goodness and caring in reaching out to another has paid off tremendously - both for you and Christa. You are my kind of people! Janice From: j ra Sent: Monday, July 05, 2010 8:40 AM To: Transverse Myelytis Subject: [TMIC] I'm back! Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but
[TMIC] Re: tmic-digest Digest V2010 #286
- Original Message - From: tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Tuesday, July 06, 2010 6:14 PM Subject: tmic-digest Digest V2010 #286
