[TMIC] thanks everyone!
Thank you all for the suggestions on staying regular. I am feeling much better now! I will go for a while without any problems and then bam, for no reason I stop going again! I am pretty sure it is my own fault though. I eat all the wrong things and I don't drink enough H2O! I suppose it is time for some changes in my diet! Thank you all again I actually might have learned a lesson here! Amanda
[TMIC] personal problem
I don't write very often, and I normally wouldn't talk to people about something so personal, but I don't know who else to ask. I have been having problems with constipation for a long time -- and it is only getting worse. As of right now I have been unable to go to the bathroom for five days. I have been taking Senokot and Miralax, plus I have been prescribed Lactulose by my neurologist. I take magnesium citrate pretty often, but it really makes me miserable when I take it. My legs get really tight and shake uncontrollably from being dehydrated. My stomach actually hurts today and I'm normally don't feel pain there. I have been to doctors and they were no help. It seems like they just take my money and run because they don't have the answer. When I went to the gynecologist she actually asked me why I thought I needed to have a Pap smear even though I told her I hadn't had one in over two years. She just didn't want to deal with me because I cannot stand up. I get this from a lot of doctors -- it seems like nobody wants to deal with me. I couldn't even find a regular family doctor-- a receptionist at one of the doctors offices I called actually told me that she didn't think the doctors there would be able to handle my case. She said that if I was a regular person that was just dealing with colds and other normal illnesses, that would be fine, but she didn't think they would know what to do to help me. Does anyone have any suggestions on what I could take to help me with this situation? I am getting very desperate for some relief! Thank you, Amanda Diskey
Re: [TMIC] EFT
what is EFT, and what does it do? From: Janet Dunn j.d...@shaw.ca To: Akua a...@artfarm.com; tmic-list@eskimo.com; tmic-l...@eskimo.net Sent: Fri, June 4, 2010 11:34:22 PM Subject: RE: [TMIC] EFT Yes, I have used / tried EFT. It is a very interesting concept. I believe it works, Janet -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: June 4, 2010 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] EFT Has anyone used or tried EFT? --
[TMIC] ADEM
So, my doctor called from John Hopkins Hospital and he says that I don't have transverse myelitis. Now he says that I have acute disseminated encephalomyelitis. I had my attack in August of 08 and now I don't know what to think. My neurologist here says that it is just a case of transverse myelitis. None of my brain MRIs have shown swelling. The first MRI showed a couple of white spots, and the one I had done in December said that it looked better. I had a biopsy done because they did a CAT scan of my chest and they thought there were granulomas but when they did do the biopsy it came back normal he said there were no granulomas the only side effect I have is the swelling in my spine so I don't understand how he can say that I have acute disseminated encephalomyelitis. Every time they run tests they come back normal blood work, CT scan, and biopsy. My MRIs of my spine still look the same, but none of the reports from the brain MRIs (the original or the recent MRI) have said anything about being abnormal. Local neurologist says my brain MRIs are clean even one when I had my attack this makes no sense. Any advice?
[TMIC] TENS/EMS Unit
I know I don't write in often, but I have a question about using my EMS unit. What are the settings supposed to be in order to get a good muscle contraction? I don't think I am doing it right! Thanks Amanda
[TMIC] Fw: chiropractor
- Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, November 12, 2009 3:14:13 PM Subject: chiropractor Does anyone here use a chiropractor or know if it is safe? My shoulders and neck hurt so bad, and I was wondering if it might help me. the lady i talked to also does massage which i will definitely do, but i was wondering about the getting adjusted part. it seems a little scary to me though. any advice or thoughts? thanks amanda
[TMIC] speech recognition software
hey everyone! anyone use the speech recognition on vista? it has been a real pain from what i can tell, cuz i am ready to throw my laptop in the floor! i been going through the training sessions on here but the piece of crap doesn't want to act right! maybe my microphone isn't good enough, or i am speaking wrong, or maybe just maybe vista sucks! anyway, if anyone could offer any advice i am all ears thanks amanda
[TMIC] Thank You!
I want to thank you all for your help! I knew it would be too good to be true! I just needed to ask, this list was the only place I trusted to go! I was planning to ask my neuro, but my appt with him is six weeks away. Anyway, I feel kind of silly for believing him! lol I have some reflexology socks so I will just get my honey to start rubbing them for me! Thank you all so very much!
[TMIC] new therapy for paralyzed
Hello all: I know I don't post often, but I came across something on the internet that I am unsure of and I would like your opinions. I found a therapist claiming to be able to help the paralyzed regain movement and sensation. He claims to be able to turn the nerves back on through a form of massage on your feet. I spoke with him on the phone yesterday and he called my house 4 times today. Check out the website below and let me know what you think! www.nsctherapyproject.com I thought it was interesting, but maybe I am too gullable
Re: [TMIC] Feet
hi priscilla, i don't blame you! what are we circus freaks! where is your tm? mine is at c5 but my arms are fine,, its my hands that are a pain. my right hand is stiff and my left is not. i can even move the fingers on my left hand some. i cannot grip well with my left hand and not at all with my right one. can you use your legs? i am in a wheelchair. just curious. amanda From: Priscilla Keene pkeen...@yahoo.com To: Janice jan...@centurytel.net Cc: tmic-list@eskimo.com Sent: Thursday, October 1, 2009 11:29:23 PM Subject: Re: [TMIC] Feet Hi Janice, No, they were normal before TM. My arms and hands are another story: my right arm is twisted inward slightly, my right hand is stiff, cannot lift my right hand-it droops like foot drop, I use a utensil holder on my right hand, I type with my right thumb. My left arm is twisted outward slightly. My left fingers are curled slightly, I can lift my left hand. I can push down my pants with my left hand, but have to pull up with the right. I can't feel hot or cold water on my arms or hands. I can't drive. I can't raise my arms over my head. Does anyone else have these strange characteristics? My neurologist had never seen this phenomenom before and wanted me to come to the university where he teaches to show his students. I opted not to do so. Have a wonderful day everyone! And happy birthday to all those celebrating this month. Priscilla in TN From: Janice jan...@centurytel.net To: Priscilla Keene pkeen...@yahoo.com; tmic-list@eskimo.com Sent: Wed, September 30, 2009 11:05:38 PM Subject: Re: [TMIC] Feet I am assuming that the feet were not a problem before TM. Janice, Missouri - Original Message - From: Priscilla Keene To: Janice ; tmic-list@eskimo.com Sent: Wednesday, September 30, 2009 8:07 PM Subject: Re: [TMIC] Feet Mine are just like yours! Have a wonderful day! Priscilla From: Janice jan...@centurytel.net To: Catherine camoa...@yahoo.com; Todd Tarno toddtm2...@sbcglobal.net; Transverse Mylitis Group tmic-list@eskimo.com Sent: Tue, September 29, 2009 7:59:34 PM Subject: Re: [TMIC] Feet Do both of yours turn in or just one. My left in fine, my right sure wants to go right (outwards). We need to be able to control our feet or no telling what direction we will end up!! Janice, Missouri - Original Message - From: Catherine To: Todd Tarno ; Transverse Mylitis Group Sent: Tuesday, September 29, 2009 5:22 PM Subject: Re: [TMIC] Feet Hey Janice, mine turn in as well. Love Catherine From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Tuesday, September 29, 2009 3:22:07 PM Subject: Re: [TMIC] Feet Hey Janice, Both of my feet turn inward. My walk is more scissors walk. Todd in CC, TX --- On Mon, 9/28/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Feet To: tmic-l...@eskimo.net Date: Monday, September 28, 2009, 9:47 PM Hello All, I was wondering if any of you had one or both feet that wants to turn out. My right foot leans to the right instead of walking straight. When I straighten it, it feels like I am walking pigeon-toed. Do any of you have something like that? Janice, Missouri Life is short, Break the rules sometimes, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile
Re: [TMIC] Fw: hopkins visit
Gracie, If I do have NMO, what will they do? Do you ever get chemo? Does it make you sick? I think I gave the wrong impression, I know I am going to one of the best hospitals there is, but that does not make it less scary to me. I am trying not to worry yet! I have two little ones and I am afraid their dad will want to take them away because of my health. I was wondering if I would even know it if I had another attack if it was below the injury I already have? Has any of your attacks affected your eyes? Do you have numerous lesions on your spine? Hopefully I haven't asked too many questions of you! Amanda From: Grace M. grace...@gmail.com To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Sent: Wednesday, July 22, 2009 2:14:09 PM Subject: [TMIC] Fw: hopkins visit Hi Amanda, Keeping my fingers crossed that you do not have NMO. Gracie (NMO since 2005)
[TMIC] Fw: hopkins visit
- Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-dig...@eskimo.com Sent: Wednesday, July 22, 2009 6:04:48 AM Subject: hopkins visit Hey everyone! I just got back from Hopkins a couple of days ago, and I have a couple of questions. First, I have 2 places on my spine C5-T2 and T9-T10 so he is testing me for NMO, ADEM and some others too I think, like lupus. What the hell is that? I looked it up and still didn't understand. Is this all standard testing or do I freak out now? How long will it take them to find out once I get the blood drawn? It has been almost a year now since my attack (August 11th). Has anyone else seen Dr. Vankatesan? That is who I seen, and I really wanted to meet Dr. Kerr, but the only person I got to meet was the lady that scanned my eyes! Anyway, he wants me to go to Shepherds and ride the FES Bike, has anyone done this and gotten good results? I looked on Shepherds website and they have a clinical trial with different robotic and manual locomotor training?, over ground gait training?, intense resistance and plyometric training?, and development sequencing?, and estim are being used to help with recovery, strengthening, spasm relief and you have to be at least one year post injury. I believe it is called the Beyond Therapy Program. What do you all think about these kinds of exercise programs? Has anyone tried anything like this? I am willing to try anything! Thanks for listening! Hope everyone is doing well and having a wonderful week:) Amanda inline: --static--ladybug_b.gifinline: --static--ladybug_t.gif
Re: [TMIC] AARP Drug Card
I downloaded a free card that does good too- i got $100 worth gabapentin for $16 and saved $35 on my baclofen. that is all i have used it for so far. http://www.rxfreecard.com/true amanda From: CANDIS KALLEY cakal...@embarqmail.com To: Richard J Boyle gunny7...@peoplepc.com; tmic-list tmic-list@eskimo.com Sent: Friday, June 19, 2009 10:57:09 AM Subject: [TMIC] AARP Drug Card Gunny, today I did look into the AARP drug card for $19.95 a year and subscribed to it. THANK YOU for the info. The FL Drug card is zero help in tier 3 meds and Forteo was going to cost me $749.00 a month - I'm already in the doughnut gap. I spent yesterday in tears. I had a glass of wine last night and woke up today and remembered you saying AARP drug card, so I signed on - I've been an AARP member for several years. I found out what you were talking about that the AARP drug card is seperate from Medicare supplement/Part D. So, I signed up after seeing that the Forteo is only $111.91 per month - about the same as I was paying for Boniva a month! I can afford that. THANK YOU again! Maybe next time I will wake up a little sooner or give me a shout back to WAKE UP! Prayers and thoughts for you and yours, Candy K.
[TMIC] my swimming escapade
Hey everyone! Either I got kicked off the list or there just isn't much happening on here! Well it is getting warm out, and it is time to get out for some fresh air and sunshine! I have been swimming two times now and it was awesome, it is the first time I have been "in" the water in over 9 months. I only get showers not baths, it felt so strange when they lowered me into the water! I had to have a floatie because apparently I cannot swim as easily as I thought! My legs want to float up when I want them down, and they want to go down when I want them to float. Go figureBut it was nice to feel like I was almost standing there, the water was nice and warm, and I was able to float on my back all by myself with no floatie!! My PT was excitedMe tooI am definitely want to find a heated pool to use, I just gotta get stronger arms to do this stuff! Can't wait to do it again. Hope all is well out there in cyber land and everyone is having a great day! amanda
[TMIC] EMS
Hey everyone! How do you know which EMS unit to buy? I would like to try this on my trunk muscles because I think they are trying to work. Maybe they just need help waking up! I am getting into the pool for the first time the 20th of this month with my physical therapist. I am really excited and anxious to see if I can swim. I have a better attitude about my progress thanks to you all! Thank you for being here for me amanda
Re: [TMIC] Fw: my transverse myelitis story
Patti, Thank you for your post. It is comforting to know that you were still healing at 9 months. I don't know what will happen, but I have faith in the Lord. I know some good will come of all this! Have a great day! amanda From: pjv1...@chartermi.net pjv1...@chartermi.net To: tmic-list@eskimo.com; Amanda Diskey adis...@yahoo.com Sent: Wednesday, May 6, 2009 6:38:49 AM Subject: Re: [TMIC] Fw: my transverse myelitis story Amanda, I have chills from reading your story and I think they started when I read that you can wiggle your toes. I hope you continue to acquire movement and will keep us up-to-date on your accomplishments. I was still healing at nine months and pray that you are too. Patti - Michigan Amanda Diskey adis...@yahoo.com wrote: - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: wllo...@tampabay.rr.com Sent: Tuesday, May 5, 2009 12:33:53 PM Subject: my transverse myelitis story Hello, I am Amanda a 30 year old single mother of two awesome kids, and this is my story about the worst day of my life! I got up that day and helped my boyfriend clean his daddy's house, we ate lunch when we were finished, and I went outside for a smoke. While smoking my cigarette I started having chest pains, and my right arm was hurting so I went back in and laid on the couch. About an hour later, or maybe more, I decided to go to the ER in case I was having a heart attack. They took me back immediately, but they could find nothing wrong with me. After six hours of tests I told them the chest pains were probably caused by my GERD (acid reflux) because it had happened to me before, and I wanted to go on home. After I left i noticed one of my knees buckled every time I took a step, but I didn't think much of it. I went to bed early cause I just didn't feel good, and I woke up about 11 p.m. because my back was on fire like it was sunburnt. There was a rash across my shoulders and down my spine. I was feeling really bad, and I told my boyfriend I needed to go back to the hospital. When I went to get out of bed I almost fell in the floor, but he caught me. I could not stand so he had to carry me to the car along with both kids. So here we go, I have to stop on the way and started throwing up over and over again. I finally get to my second hospital of the day only to run tests until 6 a.m. and finally admitted to a room where they left me lay for 12 more hours without even monitoring me. When the neurologist finally came at 6 p.m. I was paralyzed from the shoulders down. He said that 2 more hours I could have died! He transferred me to ICU at another hospital and I was 3 points away on blood oxygen levels from being put on life support. It was 2 days before I was diagnosed with TM at C6-T3 and also T9-T10. I received 5 days of IVIG, and 10 days of solumedrol, and an antiviral. I stayed in ICU for 8 days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I still go to therapy now. I got a partial recovery, my arms returned but not so much my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It has been 9 months now and who knows what could happen! Maybe they will figure out a cure one day!!
Re: [TMIC] Fw: my transverse myelitis story
Jeanne, Thank you for your support! I need to work harder, but have let myself be lazy! But, I am trying hard now and I am getting stronger. It just seems like nothing is happening now. I need more muscles to work! Maybe they will, who knows? where is your swelling, and how long before you could move your legs again? Hope you are having a wonderful day amanda From: jrushton jrush...@columbiaenergyllc.com To: Amanda Diskey adis...@yahoo.com; tmic tmic-list@eskimo.com Sent: Tuesday, May 5, 2009 7:36:18 PM Subject: Re: [TMIC] Fw: my transverse myelitis story Thank you so much for sharing with us, Amanda. You have really had a hard time but it sounds like you have had some improvements. With PT/OT and sheer determination, I think you can improve even more, truly I do! I went from where you are to being able to walk and get around on my own at home, thanks to the walls and furniture but by gosh, I walk! I still can't 'feel' like I did and do have spasms and pain but it is all so much better. Again, thank you, and we are all here to help you any way we possibly can! Jeanne ---Original Message--- From: Amanda Diskey Date: 5/5/2009 9:06:58 PM To: tmic-list@eskimo.com Subject: [TMIC] Fw: my transverse myelitis story - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: wllo...@tampabay.rr.com Sent: Tuesday, May 5, 2009 12:33:53 PM Subject: my transverse myelitis story Hello, I am Amanda a 30 year old single mother of two awesome kids, and this is my story about the worst day of my life! I got up that day and helped my boyfriend clean his daddy's house, we ate lunch when we were finished, and I went outside for a smoke. While smoking my cigarette I started having chest pains, and my right arm was hurting so I went back in and laid on the couch. About an hour later, or maybe more, I decided to go to the ER in case I was having a heart attack. They took me back immediately, but they could find nothing wrong with me. After six hours of tests I told them the chest pains were probably caused by my GERD (acid reflux) because it had happened to me before, and I wanted to go on home. After I left i noticed one of my knees buckled every time I took a step, but I didn't think much of it. I went to bed early cause I just didn't feel good, and I woke up about 11 p.m. because my back was on fire like it was sunburnt. There was a rash across my shoulders and down my spine. I was feeling really bad, and I told my boyfriend I needed to go back to the hospital. When I went to get out of bed I almost fell in the floor, but he caught me. I could not stand so he had to carry me to the car along with both kids. So here we go, I have to stop on the way and started throwing up over and over again. I finally get to my second hospital of the day only to run tests until 6 a.m. and finally admitted to a room where they left me lay for 12 more hours without even monitoring me. When the neurologist finally came at 6 p.m. I was paralyzed from the shoulders down. He said that 2 more hours I could have died! He transferred me to ICU at another hospital and I was 3 points away on blood oxygen levels from being put on life support. It was 2 days before I was diagnosed with TM at C6-T3 and also T9-T10. I received 5 days of IVIG, and 10 days of solumedrol, and an antiviral. I stayed in ICU for 8 days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I still go to therapy now. I got a partial recovery, my arms returned but not so much my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It has been 9 months now and who knows what could happen! Maybe they will figure out a cure one day!!
Re: [TMIC] Fw: my transverse myelitis story
hey janice! thank you too for your support i am hanging in here and trying to wait patiently! amanda From: Janice jan...@centurytel.net To: Amanda Diskey adis...@yahoo.com; pjv1...@chartermi.net; tmic-list@eskimo.com Sent: Wednesday, May 6, 2009 10:19:38 AM Subject: Re: [TMIC] Fw: my transverse myelitis story It really is hard to find anything good in this nasty disease, but one of the good things to come from this is meeting a group like this. The support and comfort is tremendous. You also lose the isolated feeling of having such a rare disease. I think the biggest improvements come in the first 2 years, but that is not usually the end. New improvements may be a little slower, but they usually come. Hang in, Amanda. Janice - Original Message - From: Amanda Diskey To: pjv1...@chartermi.net ; tmic-list@eskimo.com Sent: Wednesday, May 06, 2009 9:46 AM Subject: Re: [TMIC] Fw: my transverse myelitis story Patti, Thank you for your post. It is comforting to know that you were still healing at 9 months. I don't know what will happen, but I have faith in the Lord. I know some good will come of all this! Have a great day! amanda From: pjv1...@chartermi.net pjv1...@chartermi.net To: tmic-list@eskimo.com; Amanda Diskey adis...@yahoo.com Sent: Wednesday, May 6, 2009 6:38:49 AM Subject: Re: [TMIC] Fw: my transverse myelitis story Amanda, I have chills from reading your story and I think they started when I read that you can wiggle your toes. I hope you continue to acquire movement and will keep us up-to-date on your accomplishments. I was still healing at nine months and pray that you are too. Patti - Michigan Amanda Diskey adis...@yahoo.com wrote: - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: wllo...@tampabay.rr.com Sent: Tuesday, May 5, 2009 12:33:53 PM Subject: my transverse myelitis story Hello, I am Amanda a 30 year old single mother of two awesome kids, and this is my story about the worst day of my life! I got up that day and helped my boyfriend clean his daddy's house, we ate lunch when we were finished, and I went outside for a smoke. While smoking my cigarette I started having chest pains, and my right arm was hurting so I went back in and laid on the couch. About an hour later, or maybe more, I decided to go to the ER in case I was having a heart attack. They took me back immediately, but they could find nothing wrong with me. After six hours of tests I told them the chest pains were probably caused by my GERD (acid reflux) because it had happened to me before, and I wanted to go on home. After I left i noticed one of my knees buckled every time I took a step, but I didn't think much of it. I went to bed early cause I just didn't feel good, and I woke up about 11 p.m. because my back was on fire like it was sunburnt. There was a rash across my shoulders and down my spine. I was feeling really bad, and I told my boyfriend I needed to go back to the hospital. When I went to get out of bed I almost fell in the floor, but he caught me. I could not stand so he had to carry me to the car along with both kids. So here we go, I have to stop on the way and started throwing up over and over again. I finally get to my second hospital of the day only to run tests until 6 a.m. and finally admitted to a room where they left me lay for 12 more hours without even monitoring me. When the neurologist finally came at 6 p.m. I was paralyzed from the shoulders down. He said that 2 more hours I could have died! He transferred me to ICU at another hospital and I was 3 points away on blood oxygen levels from being put on life support. It was 2 days before I was diagnosed with TM at C6-T3 and also T9-T10. I received 5 days of IVIG, and 10 days of solumedrol, and an antiviral. I stayed in ICU for 8 days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I still go to therapy now. I got a partial recovery, my arms returned but not so much my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It has been 9 months now and who knows what could happen! Maybe they will figure out a cure one day!!
[TMIC] Fw: my transverse myelitis story
- Forwarded Message From: Amanda Diskey adis...@yahoo.com To: wllo...@tampabay.rr.com Sent: Tuesday, May 5, 2009 12:33:53 PM Subject: my transverse myelitis story Hello, I am Amanda a 30 year old single mother of two awesome kids, and this is my story about the worst day of my life! I got up that day and helped my boyfriend clean his daddy's house, we ate lunch when we were finished, and I went outside for a smoke. While smoking my cigarette I started having chest pains, and my right arm was hurting so I went back in and laid on the couch. About an hour later, or maybe more, I decided to go to the ER in case I was having a heart attack. They took me back immediately, but they could find nothing wrong with me. After six hours of tests I told them the chest pains were probably caused by my GERD (acid reflux) because it had happened to me before, and I wanted to go on home. After I left i noticed one of my knees buckled every time I took a step, but I didn't think much of it. I went to bed early cause I just didn't feel good, and I woke up about 11 p.m. because my back was on fire like it was sunburnt. There was a rash across my shoulders and down my spine. I was feeling really bad, and I told my boyfriend I needed to go back to the hospital. When I went to get out of bed I almost fell in the floor, but he caught me. I could not stand so he had to carry me to the car along with both kids. So here we go, I have to stop on the way and started throwing up over and over again. I finally get to my second hospital of the day only to run tests until 6 a.m. and finally admitted to a room where they left me lay for 12 more hours without even monitoring me. When the neurologist finally came at 6 p.m. I was paralyzed from the shoulders down. He said that 2 more hours I could have died! He transferred me to ICU at another hospital and I was 3 points away on blood oxygen levels from being put on life support. It was 2 days before I was diagnosed with TM at C6-T3 and also T9-T10. I received 5 days of IVIG, and 10 days of solumedrol, and an antiviral. I stayed in ICU for 8 days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I still go to therapy now. I got a partial recovery, my arms returned but not so much my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It has been 9 months now and who knows what could happen! Maybe they will figure out a cure one day!! inline: stat9584.jpginline: stat.jpg
[TMIC] herbs
hey everyone, I was wondering if anyone takes any herbs for their tm? i saw about the valerium root and melatonin for sleep, and i see advertisements for herbs to treat "myelitis" all the time online. so i was just wondering if anyone has ever tried any of them and what the results were. also, i loved the poems akua, i too am stuck in a wheelchair and it breaks my heart every day. It is so very hard not to be able to do the things you want to do any more. I want to walk again more than anything. A good friend of mine said that james 1:2 says "consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that testing of your faith develops perseverance." You have to run this race with your eyes on Jesus or you will fall. She is probably the best "friend" i have and she inspires me to try harder. I know that faith will pull us through! amanda
Re: [TMIC] Amanda needs our support!!
Thank you Heather! I am actually going to John Hopkins in July to see one of
the neurologists in the TM center. I am very excited!! Jim Lubin is a
fascinating person isn't he!
From: Pieter and Heather pieterheat...@shaw.ca
To: jrushton jrush...@columbiaenergyllc.com; Janice jan...@centurytel.net;
Amanda Diskey adis...@yahoo.com; tmic tmic-list@eskimo.com
Sent: Wednesday, April 22, 2009 11:16:32 AM
Subject: Re: [TMIC] Amanda needs our support!!
Amanda,
Another place to get information is the TM Association website as well. Also
the John Hopkins website has good information too. I go to the TMA website
everyday as well.
Jim Lubin our computer guru who started this site years ago is also a quad on a
ventilator. I know he does not live totally independently as he has help but
he does very well from all I have read.
As Jeanne says, read all you can and get educated about this TM. It has played
havoc with s many lives. Whether we are affected a lot or a little it
changes us and those around us.
{{Hugs}}
Heather in Calgary
- Original Message -
From: jrushton
To: Janice ; Amanda Diskey ; tmic
Sent: Tuesday, April 21, 2009 7:26 PM
Subject: Re: [TMIC] Amanda needs our support!!
..yes, and read all you can from everyone because there are so many
similarities even tho our injuries may be totally different. Sometimes, right
out of the blue you will read something that can really help you but the main
thing is getting educated about this old thing that we have. We're all here
for you every single day!! Jeanne
---Original Message---
From: Janice
Date: 4/21/2009 10:20:13 PM
To: jrushton; gor...@earthlink.net; tmic
Subject: Re: [TMIC] Amanda needs our support!!
Amanda, you certainly have my support and prayers, but I have no ideas for
you. There are others here who are
quads and you will surely hear from them. Let us hear more from you on how you
are doing. Janice
- Original Message -
From: jrushton
To: gor...@earthlink.net ; tmic
Sent: Tuesday, April 21, 2009 7:46 PM
Subject: Re: [TMIC] Amanda needs our support!!
adis...@yahoo.com
I got it through our tmic??
---Original Message---
From: gor...@earthlink.net
Date: 4/21/2009 6:54:35 PM
To: jrushton
Subject: Re: [TMIC] Amanda needs our support!!
what is her email addy?
- Original Message -
From: jrushton
To: tmic
Sent: Tuesday, April 21, 2009 10:34 AM
Subject: [TMIC] Amanda needs our support!!
Hi, everyone! We have a new TMer that wrote in last week. She must have
problems with the chat line because she hasn't heard from anyone but me and one
other person and that is really unusual for our group!! I'll copy her note to
show you that she needs us and our support!! ::)) Jeanne in Dayton
Amanda's note:
I was wondering if there is anyone here who is a c6 quad with very little use
of their hands and no use of their legs that lives independently. I am needing
to talk to someone who can offer some advice on how I can do some things.
[TMIC] quadraplegia
I was wondering if anyone else on here is a c6 quad that is in a wheelchair and not much use of their hands who lives independently. I am sooo frustrated that i have to depend so much on my family and friends, although I am blessed to have them, I want to be my independent self again. I want to be able to at least be able to handle my own self at home. I need someone to talk to for some advice if anyone has any.
[TMIC] quadraplegia
I was wondering if there is anyone here who is a c6 quad with very little use of their hands and no use of their legs that lives independently. I am needing to talk to someone who can offer some advice on how I can do some things. From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Sunday, April 19, 2009 10:48:07 AM Subject: tmic-digest Digest V2009 #291 -Inline Message Follows- tmic-digest Digest Volume 2009 : Issue 291 Today's Topics: Re: [TMIC] leg and foot comfort in b [ Janice jan...@centurytel.net ] Re: [TMIC] leg and foot comfort in b [ Janice jan...@centurytel.net ] -Inline Message Follows- I am s fortunate that I don't have the skin sensitivity that so many of you talk about. If I pull up something really soft, like my gown or robe, I will spasm for a minute, but I don't really have pain, just discomfort and only for a minute. I would think that the cotton knit would be a blessing. I like 100% cotton to sleep in for summer - it helps keep me cool. Janice - Original Message - From: balmat...@aol.com To: tmic-list@eskimo.com Sent: Thursday, April 16, 2009 12:20 AM Subject: Re: [TMIC] leg and foot comfort in bed I am such a happy camper with my cotton knit. Such a miraculous fiber. Isn't it great when we find something that works for us, most of the time It's just amazing! It's definately a game of trial and error, that's for sure. Life is so much fun when you have TM. The majority of my sensitivity is in the evening and during the night. There are times when I cannot even stand skin to skin contact. That's why I sleep on my back with my knees bent many nights. Take care everyone! Hugs, Barbara A -Original Message- From: Janice jan...@centurytel.net To: tmic-list@eskimo.com; balmat...@aol.com Sent: Wed, 15 Apr 2009 8:30 pm Subject: Re: [TMIC] leg and foot comfort in bed I have the sensitivity of cloth rubbing (or barely touching) my legs too. But, I have no problem with sheets and blankets on me at nite. I sleep with a pillow between my knees and that takes care of any problems I guess. I have slept with a summer gown all winter, otherwise I get too hot. Janice - Original Message - From: balmat...@aol.com To: tmic-list@eskimo.com Sent: Wednesday, April 15, 2009 12:23 AM Subject: [TMIC] leg and foot comfort in bed I think that this is something that most of us suffer from at some point during our TM lives, skin sensitivity against fabric, and it's the worst when we are trying to get some much needed sleep. I have purchased so many sets of sheets and blankets over my TM years (T 8-10, 6/1/99), and I have had this sensitivity for most of that time. It started as sensitivity and is so often PAIN. I've gone from egyptian cotton, very good quality flannel, jersey (like T-shirt material) and all sorts of thread counts of cotton. In sheets, I think that most of the time, my most comfortable sheet happens to be the jersey. I'm not saying that I can always have my legs against them, because I cannot, I lay on my back many nights with my knees bent so nothing touches my legs. Blankets are much worse, so you need to get the most comfortable sheet you can near your skin. If you have any old pajama bottoms, those are also some of the most comfortable, or I wear the short ones. I've bought some microfiber plush pants this year from OldNavy.com and they have been warm on my legs and haven't irritated them. I am very much looking forward to warmer weather when I can wear short pants all the time and not being uncomfortable. Hugs to all, Barbara A in CA Great deals on Dell s most popular laptops Starting at $479 Why pay full price? Check out this month's deals on the new AOL Shopping. -Inline Message Follows- Just thought I'd let you know that I am completely opposite. I can not sleep on my back. I really spasm around my middle section trying to get in that position and trying to get back up is a nitemare. I stick to sleeping on my side with a pillow between my legs to lessen spasms. Also take baclofen for spasms - helps a lot. I also have developed a thing of needing to have air movement when I go to bed. I have the ceiling fan going on no matter what the room temperature is. I just need air movement. This has really been an adventure/nitemare. Love the support of family and friends - and other TM'ers! - Original Message - From: Gillian Clark To: TM list Sent: Thursday, April 16, 2009 10:04 PM Subject: Re: [TMIC] leg and foot comfort in bed It has only just occurred to me that sleeping on my back is the only way I have slept now for years. Since the day of the attack I haven't been able to sleep any other way, in the beginning, I
[TMIC] Re: tmic-digest Digest V2009 #218
Hello everyone! Jude, I am so glad your surgery went well and you are back home. There really is no place like home, no matter how bad I feel it is always better to be in my own warm cozy little house. Hospitals are just yucky! I wish I could meet you one day, I bet you are one of the sweetest angels to ever grace the earth with your presence! I think of you often, and pray for you. Hope that everyone has a wonderful Easter weekend! - Amanda From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Tuesday, April 7, 2009 8:18:02 AM Subject: tmic-digest Digest V2009 #218 -Inline Message Follows- tmic-digest Digest Volume 2009 : Issue 218 Today's Topics: RE: [TMIC] Hello Jude! [ Margaret Monson mag...@telus.net ] RE: [TMIC] Hello Jude! [ Jan Hargrove jmh1...@sbcglobal.net ] [TMIC] ACAI [ Regina Rummel regina...@sbcglobal. ] Re: [TMIC] FROM JUDE [ Akua a...@artfarm.com ] Re: [TMIC] ACAI [ Janice jan...@centurytel.net ] [TMIC] Hello everyone the sun is shi [ cjb...@aol.com ] [TMIC] Where is everyone [ rn11...@yahoo.com rn11...@yahoo. ] -Inline Message Follows- Thank you for your note, Patti. The recover is moving along slowly. Part of my problem is that I have so much scar tissue from 14 previous surgeries that it is limiting my movement quite a bit. I am working hard on it every day and I am sure that once the “zipper” (staples) are removed, it will be much easier. Margaret From:Patricia Cooley [mailto:patticoo...@wi.rr.com] Sent: April-03-09 8:39 AM To: 'Margaret Monson'; tmic-list@eskimo.com Subject: RE: [TMIC] Hello Jude! MARGARET: I WISH YOU A SPEEDY RECOVERY FROM YOUR KNEE REPLACEMENT. MY HUSBAND HAD BOTH KNEES REPLACED ABOUT 3 YEARS AGO. HIS RECOVERY WAS TERRIFIC. OF COURSE, THERE IS A LOT OF PAIN WITH P.T., BUT IT IS TO YOUR BEST INTEREST TO TRY AS HARD AS YOU CAN. HE WAS VERY FAITHFULL DOING HIS PRE-SURGERY EXERCISES WHICH I THINK HELPED HIM RECOVER SO FAST. YOU WOULD NEVER KNOW THAT HE HAS NEW KNEEWS. HE CAN DO EVERYTHING, EVEN KNEEL IN HIS GARDEN. THE ONE PLUS SIDE IS HE IS NO LONGER BOWLEGGED. WE USE TO TEASE HIM THAT A CAR COULD DRIVE THROUGH AND HE WOULDN’T KNOW IT. NOW HE WISHES HE HAD DONE IT YEARS AGO. GOOD LUCK IN YOUR RECOVERY. PATTI - WISCONSIN From:Margaret Monson [mailto:mag...@telus.net] Sent: Thursday, April 02, 2009 1:31 PM To: heyjude48...@aol.com Cc: tmic-list@eskimo.com; tmic-digest-requ...@eskimo.com Subject: [TMIC] Hello Jude! I am glad to hear that you are home and healing. I hope that all is going well. You were and are in my thoughts. Although we have never personally met or talked with each other, I welcome your emails to the list. You always seem to have such a positive outlook on things no matter what is thrown at you. You always have a kind word and offer advice based on your experience. Jude, you are a gem. I am at home recuperating from a partial knee replacement done on March 26. I am healing well but know this will be a slow recovery. I was amazed at the number of doctors and people who actually think you can fully recover from TM. One doctor was surprised when I told him that you never fully recover and will always have TM. You only recover to the best that your body can. Do take care Jude and I hope you are able to post soon! I miss your emails! Margaret Edmonton AB Canada -Inline Message Follows- We had a great friend who had terrible knees, had to quit playing tennis and golf. Finally he decided to suck it up and have them 'fixed'his recovery was rapid and he said he had no idea how much pain he'd been in before he had no pain!! I say, get it fixrd so we can go on down the road!! and that's how Ive treated tm, I refuse to let it keep me from living!!! janh --- On Fri, 4/3/09, Patricia Cooley patticoo...@wi.rr.com wrote: From: Patricia Cooley patticoo...@wi.rr.com Subject: RE: [TMIC] Hello Jude! To: 'Margaret Monson' mag...@telus.net, tmic-list@eskimo.com Date: Friday, April 3, 2009, 9:38 AM MARGARET: I WISH YOU A SPEEDY RECOVERY FROM YOUR KNEE REPLACEMENT. MY HUSBAND HAD BOTH KNEES REPLACED ABOUT 3 YEARS AGO. HIS RECOVERY WAS TERRIFIC. OF COURSE, THERE IS A LOT OF PAIN WITH P.T., BUT IT IS TO YOUR BEST INTEREST TO TRY AS HARD AS YOU CAN. HE WAS VERY FAITHFULL DOING HIS PRE-SURGERY EXERCISES WHICH I THINK HELPED HIM RECOVER SO FAST. YOU WOULD NEVER KNOW THAT HE HAS NEW KNEEWS. HE CAN DO EVERYTHING, EVEN KNEEL IN HIS GARDEN. THE ONE PLUS SIDE IS HE IS NO LONGER BOWLEGGED. WE USE TO TEASE HIM THAT A CAR COULD DRIVE THROUGH AND HE WOULDN’T KNOW IT. NOW HE WISHES HE HAD DONE IT YEARS AGO. GOOD LUCK IN YOUR RECOVERY. PATTI - WISCONSIN From:Margaret Monson [mailto:mag...@telus.net] Sent: Thursday,
[TMIC] Thank you
I just want to say that I am amazed at the amount of information I have gotten from you all about stem cell research and use! I never expected such a response, but I didn't know who else to ask. Of course my family and friends just want me to get better, and I want to be normal again so bad I would do anything to be that way. I miss playing with my kids, and cleaning my house, and driving, and going to work, using my hands, not wearing depends, and not being embarassed to go in public because of all of the above. I just want to be me again! I was looking for an easy fix, even if it cost 30,000, but thanks to this list I can make a more informed decision. This list is a wonderful place to go for information or support. I don't post a lot, but I always read the posts. Thank you all so much for understanding when no one else does! AMANDA From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Thursday, March 26, 2009 10:03:50 PM Subject: tmic-digest Digest V2009 #200 -Inline Message Follows- tmic-digest Digest Volume 2009 : Issue 200 Today's Topics: Re: [TMIC] going to DC [ Lawrence King we4king...@verizon.n ] Re: [TMIC] Embrionic Stem Cell Discu [ Lawrence King we4king...@verizon.n ] -Inline Message Follows- Try to find the Albert Einstein memorial near the Vietnam Vets Memorial Constitution Ave. we wanted to get there but the bone chilling cold 9F. got the better of us and we gave up on both. It's a site most tourists miss and don't know about. and the museum of natural history is renovated and wonderful... you can see the hope diamond. I want to hear about it when you get back! On Mar 26, 2009, at 9:09 PM, ptpatti200...@aol.com wrote: Mindy the Artist Thanks Mindy I found the info on the tourmobile before we decided that I needed some sort of transport and I forgot about the wheelchair storage on the bus so that link was helpful. . It will be perfect. I found that it was the only bus through the cemetary - one of our desired stops. I know we are going to use their two-day pass and see all of those sights. Did you have a special spot that I might miis if I wasn't aware of it in advance? I'm taking all the advice I can get. Thanks Patti - Michigan -Original Message- From: Lawrence King we4king...@verizon.net To: tmic-list@eskimo.com Cc: Lawrence King we4king...@verizon.net Sent: Wed, 25 Mar 2009 2:38 pm Subject: Re: [TMIC] going to DC Hi Patti, We went to DC in Jan for my father-in-laws funeral at Arlington Natnl. Cemetery and decided it was now or never to show the kids DC. What ever your needs are I encourage you to take this tour bus: http://www.tourmobile.com/disability.php and not the other ones. I believe it cost us $32 per adult a day and we could get on and off at will. I am walking wounded and would have been in agony if I had to walk from monument to monument. I gave you the disability page so you can discuss your needs with them. this is the only tour that has Natln. park service affiliation (and the monuments are a natnl. park) and be happy there are accommodations at all the monuments to allow full access regardless of your level of ability. So enjoy yourself and wear an Obama button (the workers will be friendlier) Mindy the Artist Jeanne What a story! You couldn't make that up if you tried and I think it's better (or worse) than anything I've seen on House. Your miracle is that you lived long enough to get to the right hospital and that they started you on steroids. Thanks for sharing the details. You brought up the subject of maneuverability and I need help dealing with it. I decided it was time to go to Washington DC - a long-time desire of my hubby and myself. I always use a cane and have a wheelchair that I loaned out a year ago, but could get back. I quit wearing my AFO after two years because my feet burn and I prefer to wear shoes that I can take off every time I sit down (even in public.) I looked pitiful sitting with my brace beside me letting my feet breathe. So, I will need to use a walker and/or be pushed in a wheelchair in Washington and am concerned about my hubby lifting the chair in and out of our car. I have looked at 3 wheeled walkers that would be easier to maneuver in crowds, 4 wheeled walkers of all kinds, a 4 wheeled that turns into a transport chair ($400), and just a simple transport chair itself A transport chair is a wheelchair for being pushed in, with (4) ten-inch wheels instead of the large wheels on the back for self-maneuvering. The transport chair ! is about 12 lbs. lighter than my wheelchair and would be easier to get into my small car. The 4 wheeled walker that turns into a wheelchair is $400 on-line. A transport wheelchair is $200 at Walmart. I can buy a 3-wheeled or a 4-wheeled walker for $50
[TMIC] ONE OTHER THING
I did not add that the stem cells they use at the hospital in Panama come from your own fat cells and cord blood, not embryonic stem cells. It is 10 injections total 2 in an IV and 8 in your spine. I am going to wait for Dr. Kerr to get approval from the FDA. I know it could be worse, and I don't want to chance that! From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Wednesday, March 25, 2009 9:20:00 PM Subject: tmic-digest Digest V2009 #190 -Inline Message Follows- tmic-digest Digest Volume 2009 : Issue 190 Today's Topics: Re: Fw: [TMIC] stem cell (OT?) [ Jim Lubin jlu...@eskimo.com ] Re: [TMIC] stem cell (OT?) [ Lawrence King we4king...@verizon.n ] Re: [TMIC] blood, tissue, organ dona [ gor...@earthlink.net ] RE: [TMIC] blood, tissue, organ dona [ Margaret Monson mag...@telus.net ] -Inline Message Follows- The problem I have with defining life as Gunny has as not beginning until 28 days after conception (the joining of the male sperm and the female egg) is that once conception occurs the zygote contains all of the genetic information (DNA) necessary to become a child. Half of the genetic information comes from the mother’s egg and half from the father’s sperm. The zygot continues to divide, creating an inner group of cells with an outer shell. This stage is called a blastocyst. The inner group of cells will become the embryo, while the outer group of cells will become the membranes that nourish and protect it. To me it makes sense the life begins at conception, as a single cell zygote, since at that point it contains everything to make a unique, individual and continues to divide on it's own. It happens without brain. Embryonic stem cell come from the blastocyst stage 4–5 days post fertilization, at which time they consist of 50–150 cells. Every biology reference I have found talks about the beginning of life being the union of the two gametes, the male and female reproductive cells of any species. Jim I suggest reading, Declaration On The Production And The Scientific And Therapeutic Use Of Human Embryonic Stem Cells http://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_2824_cellule-staminali_en.html - Original Message - From: bgunny7...@aol.com To: gbthomas8...@sbcglobal.net Sent: Wednesday, March 25, 2009 11:18 AM Subject: Re: [TMIC] stem cell (OT?) In a message dated 3/25/2009 11:06:05 AM Eastern Daylight Time, gbthomas8...@sbcglobal.net writes: Our former president, George W. Bush, so direspectfully referred to on this list as dumdum, was simply against the use of our tax money for embryonic stem cell research in consideration for those opposed, on moral grounds, to the use of aborted fetuses. Stem cell research was not stopped. It has widely been proclaimed (even on this list) that adult stem cell research has actually been more successful than embryonic cell research -Inline Message Follows- tAs a mother who conceived (the natural way) 6 times but only gave birth to 2 live infants I feel qualified to remind the greater community that every successful conception does not equal a child born even in natural circumstances, much less conceptions that occur in a dish. I mourned each one of those miscarriages as a child lost even after my 2nd child was born and I knew in my heart that my family was complete and that I was done with the baby stage of my life. My experience also led me to the conclusion that a life that cannot survive outside the mother is not entitled to citizenship rights equal to that of the mother until it is mature enough to survive once the umbilical cord is cut (or has turned 18, which ever comes first). When I got my drivers license I asked for an organ donor sticker and informed my parents of my wishes in the event of my death. As a parent I could be called upon to make a similar decision should a child of mine suffer a life ending tragedy... that the purpose of his or her short life can take on new meaning by giving life to others. whether you consider them blastocysts or babies, the couples who conceived them have already made the decision that they will never be born and have a meaningful purpose outside the petri dish. I truly believe the parents should have the right to decide the fate regarding the use of their unused fertilized egg's stem cells as well. Just as Jehovah's Witnesses refuse blood transfusions on the basis of their beliefs, each one of us has the right to refuse any treatment we are uncomfortable with. but as for me, I donate blood (4 gallons), gave a sample to the bone marrow registry and if Dr. Kerr can use my middle aged eggs to heal others then he is welcome to them. Mindy the Artist The problem I have with defining life as Gunny has as not beginning until 28
[TMIC] stem cell
I found a hospital in Panama City, Panama affiliated with Johns Hopkins, and they say they can treat me with stem cells. The lady I spoke with says they have treated one person with TM and got good results. The cost is $30,000. What do you all think?
[TMIC] Re: RASHES
When I had my attack (that what i call it) I woke up feeling like my back was on fire. I thought I had gotten sunburned, but i had a rash across my shoulders and straight down my spine. When I tried to get out of bed I could not stand. My neuro said the rash was a coincidence and had nothing to do with the TM. But, the rash was at the same level as the swelling in my spine. I never did get an answer, and I have the rash on my head right now. My rash is also red bumps and it actually looks like acne but it itches. I bought some Neutrogena anti-acne body wash with salicylic acid in it and used some acne free lotion with the same thing in it and it went away from my back and all. It just recently reappeared on my head! Have a great evening. Amanda --- On Mon, 3/2/09, tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com wrote: From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2009 #124 To: tmic-dig...@eskimo.com Date: Monday, March 2, 2009, 12:06 AM tmic-digest Digest Volume 2009 : Issue 124 Today's Topics: Re: [TMIC] For you MSr's [ jharpe...@aol.com ] [TMIC] anniversary[ Lawrence King we4king...@verizon.n ] [TMIC] March Birthdays[ jharpe...@aol.com ] [TMIC] Birthday [ celr...@aol.com ] I think that's excellent. The only word I have a little trouble with is imposing -- Individuals who insist on imposing their own beliefs on discussions risk alienating others whose beliefs differ. I agree completely with that statement, but I have experienced sometimes people thinking I am imposing my beliefs when I am just sharing them. But I don't know if there is a better way to word it. I think readers just have to take things in that vein-- that anything shared is the individual's own perspective and what each individual believes is his or her own choice. Barbara H. in SC where we have 5 inches of snow (a big deal for us :-) ) http://barbarah.wordpress.com/ In a message dated 3/1/2009 11:24:26 P.M. Eastern Standard Time, we4king...@verizon.net writes: Hi all, if it were up to me (and I know that it's not!) this is how I would write such a policy: Transverse Myelitis is a disease, which strikes without mercy or regard to sex, race, nationality, religious belief and political affiliation. It’s impact reaches into every area of our lives, from our relationships with family and friends, to our physical, mental, and emotional well being, and to our spiritual lives in ways few of us could have ever imagined. For some of us Tm brings about a renewal of faith and for others a crisis, still others find no connection between this disease and spiritual matters. A great many of us discover that a re-examination of our beliefs is part of our journey. For those of us who do have faith, its aspects: readings, meditations, prayers, rituals and communities are as fundamental to our recovery and survival as our medications and therapies. If we are to fully help each other in coping with this disease and it’s aftermath, spiritual discussions are at times unavoidable. But for our group’s purpose, there is no affiliation with any one religion or doctrine. Individuals who insist on imposing their own beliefs on discussions risk alienating others whose beliefs differ and this diminishes our service to each other. In the same way that each one of us takes away suggestions of products, medications and therapies that we think may be helpful and disregards the rest, so should it be with spiritual discussions. As for politics: there is no place for such discussions here as our members come from many nations. However, notices of pending legislation(s), which directly impacts this disease and its sufferers, may be posted. Our sole purpose is to help each other and there is no support when tempers flare and condemnations rather than sympathies are expressed. copywrite 2009 Mindy King Mindy the Artist On Mar 1, 2009, at 9:09 AM, heyjude48...@aol.com wrote: Trudy and Mindy, I believe that what you are suggesting regarding a way to share religious discussions in a manner that would respect each of us and our individual and shared beliefs is just a wonderful idea. I have long wanted to express the way I feel about Prayer and the Father, Son and Holy Ghost. Prayer works, regardless of who or what we Pray to as long as it is done in a pleasing manner to Our Father. There would probably have to be some ground rules. Maybe a small committee could be formed to address the issues that may come up, as they do in any large group. We always need organization, blah, blah, blah. It is a good thing. It's time for me to get off of the computer. I love and Pray for you all. Jude In a message dated 2/28/2009 3:48:14 P.M. Eastern Standard Time, mother...@msn.com writes:Mindy So much of what you shared is
[TMIC] Re: tmic-digest Digest V2009 #113
Hello everyone, Thanks for all of the responses. I am glad to be able to ask
someone besides my therapist! The only things I take are baclofen, gabapentin,
and potassium. The gabapentin I am trying to work my way off of. I also wonder
if anyone else gets a burning sensation in their spine? Would that be nerve
pain? Hope you are all having a wonderful day!
Amanda
--- On Fri, 2/27/09, tmic-digest-requ...@eskimo.com
tmic-digest-requ...@eskimo.com wrote:
From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2009 #113
To: tmic-dig...@eskimo.com
Date: Friday, February 27, 2009, 10:32 AM
tmic-digest Digest Volume 2009 : Issue 113
Today's Topics:
[TMIC] RE: tmic-digest Digest V2009 [ marieke dufresne
marieke...@hotmai ]
RE: [TMIC] Muscle Spasms [ Butcher, Bernard G (NY80)
Bernie ]
RE: [TMIC] RE: tmic-digest Digest V2 [ Butcher, Bernard G (NY80)
Bernie ]
#yiv451629924 .hmmessage P
{
margin:0px;padding:0px;}
#yiv451629924 {
font-size:10pt;font-family:Verdana;}
Amanda, you can take a max dose of 100-120mg a day of Baclofen and/or ask for
Tizanidine (Zanaflex) as well. I take 100mg of Baclofen a day (20-20-20-40) and
2mg of Zanaflex at night as well. I used to take more Zanaflex throughout the
day too.
Marieke TM @T1 2004
--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 16:56:29 -0800
From: adis...@yahoo.com
To: tmic-list@eskimo.com
Subject: [TMIC] Muscle Spasms
--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 19:37:45 -0700
From: cherp...@msn.com
To: jrush...@columbiaenergyllc.com; tmic-list@eskimo.com; bernie.butc...@.com
Subject: Re: [TMIC] Is anybody there??
Linda
- Original Message -
From: Butcher, Bernard G (NY80)
To: jrushton ; tmic
Sent: Thursday, February 26, 2009 12:35 PM
Subject: RE: [TMIC] Is anybody there??
yes
BERNARD BUTCHER
From: jrushton [mailto:jrush...@columbiaenergyllc.com]
Sent: Thursday, February 26, 2009 12:06 PM
To: tmic
Subject: [TMIC] Is anybody there??
--Forwarded Message Attachment--
Date: Thu, 26 Feb 2009 19:47:22 -0800
From: jillybean60...@yahoo.com
To: tmic-list@eskimo.com
Subject: [TMIC] For you MSr's
I know some of us TMr's turned into MSr's and I was just wondering have any of
you experienced that Lhermette's sign when you bend your neck forward and get
electric down your legs? And does that ever go away???
Thanks,
Jill in Chicago
TM '04
MS '09 :(
So many new options, so little time. Windows Live Messenger.
yes. I take Tizanidine for twitching at night - it helps alot, and helps me
sleep. My neuro also prescribed 60mg/day baclofen, but I found that after 30mg
for a couple of days, I became like a rag doll, I couldn't sit up without
flopping over had a hard time standing up! - I do need baclofen for spasms, I
find 15mg/day does it
Barney
From: Amanda Diskey [mailto:adis...@yahoo.com]
Sent: Thursday, February 26, 2009 7:56 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Muscle Spasms
My doc has me taking 20mgs 3x's/day of baclofen for muscle spasms, they still
keep me up half the night my legs shake so bad and I am staying pretty tight
even though I stretch twice a day. Does anyone have any suggestions? Is there
something else I could take or do? I am miserable!
Amanda
--- On Thu, 2/26/09, tmic-digest-requ...@eskimo.com
tmic-digest-requ...@eskimo.com wrote:
From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2009 #110
To: tmic-dig...@eskimo.com
Date: Thursday, February 26, 2009, 2:06 PM
tmic-digest Digest Volume 2009 : Issue 110
Today's Topics:
RE: [TMIC] ANOTHER QUESTION [ Patricia Cooley
patticoo...@wi.r ]
[TMIC] Re: Imuran (Azathioprine.) [ Grace M.
grace...@gmail.com ]
[TMIC] Is anybody there?? [ jrushton
jrush...@columbiaenergy ]
#yiv1570635184 UNKNOWN {
FONT-FAMILY:Cambria Math;panose-1:2 4 5 3 5 4 6 3 2 4;}
#yiv1570635184 UNKNOWN {
FONT-FAMILY:Calibri;panose-1:2 15 5 2 2 2 4 3 2 4;}
#yiv1570635184 UNKNOWN {
FONT-FAMILY:Tahoma;panose-1:2 11 6 4 3 5 4 4 2 4;}
#yiv1570635184 #yiv1323464591 #yiv1323464591 P.MsoNormal {
FONT-SIZE:12pt;MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;}
#yiv1570635184 #yiv1323464591 LI.MsoNormal {
FONT-SIZE:12pt;MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;}
#yiv1570635184 #yiv1323464591 DIV.MsoNormal {
FONT-SIZE:12pt;MARGIN:0in 0in 0pt;FONT-FAMILY:Times New Roman, serif;}
#yiv1570635184 #yiv1323464591 A:link {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv1570635184 #yiv1323464591 SPAN.MsoHyperlink {
COLOR:blue;TEXT-DECORATION:underline;}
#yiv1570635184 #yiv1323464591 A:visited {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv1570635184 #yiv1323464591 SPAN.MsoHyperlinkFollowed {
COLOR:purple;TEXT-DECORATION:underline;}
#yiv1570635184 #yiv1323464591 SPAN.EmailStyle17 {
COLOR:#1f497d
[TMIC] Re: tmic-digest Digest V2008 #431
i have a question, has anyone else been told that they don't have lesions on
their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so
what does that mean? will the swelling go down? will i be able to recover? i am
a single mother of two and i really want to be able to take care of myself and
my babies. i keep thinking i am not trying hard enough. i am wheelchair bound,
and it seems recovery is happening but very slow. got diagnosed aug. 11th of
this year and was told i would see most of recovery from 3-6 months. i feel
like i am on some deadline and my time to get better will be up soon. i am
scared and i am not sure what to do. any advice?
thanks
amanda in calhoun, ga
--- On Thu, 11/20/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: tmic-digest Digest V2008 #431
To: [EMAIL PROTECTED]
Date: Thursday, November 20, 2008, 1:19 PM
tmic-digest Digest Volume 2008 : Issue 431
Today's Topics:
RE: [TMIC] Anybody else been there? [ jrushton
[EMAIL PROTECTED] ]
[TMIC] Re: Terry walking [ [EMAIL PROTECTED] ]
#yiv408495886 v\:* {
}
#yiv408495886 v\:* {
}
You will never be alone as long as we all hang in there together. What I write
comes from the bottom of my heart even if it doesn't always come out right!!
And, yes, we do understand. We are a chosen few and that makes us pretty
special! j
---Original Message---
From: Robert Pall
Date: 11/20/2008 7:06:15 AM
To: jrushton
Subject: RE: [TMIC] Anybody else been there?
Jeanne...both you and Tobe have made me feel less alone...to me that is what
this list is all about...people who truly understand!
Thanks
Rob
From: jrushton [mailto:[EMAIL PROTECTED]
Sent: Wednesday, November 19, 2008 4:40 PM
To: [EMAIL PROTECTED]; tmic
Subject: Re: [TMIC] Anybody else been there?
Rob, I didn't get your message but reading Tobe's I just needed to tell you
that could not have said it any better! Jack is always saying he would not be
able to live with the TM like I do, as we all do, but everyone does what he or
she has to. We try to keep the best attitudes we possibly can and that does
help us inside but oh, sometimes it hurts so bad and there are no words to
describe it. I just say again, keep on keepin' on...
Jeanne in Dayton
Leila, ( I love your name)!
I asked Terry what he feels has made him take all these steps recently and he
can't really pinpoint one thing. His muscles definitely atrophied, but he has
begun to rebuild them a bit. He had GREAT LEGS! He doesn't do PT accept in
the summer in a pool. He can completely walk in a pool. He has this buoyant
waist belt that assists him so he can go the distance.
I feel some of the reason he was able to take these steps is that he is always
in and out of his wheelchair, he stands a lot cooking and gardening using the
wheelchair for balance if needed. I also think if he didn't have shoulder
issues, he would have been able to use a walker or crutches much sooner or more
often. His arms became his legs and now his shoulders are shot thanks to
osteonecrosis (prednisone induced). One shoulder replacement and 1 other
surgery on each shoulder. His other shoulder needs to be replaced.
I'm wondering why you don't have a firm DX?? The gradual deterioration sounds
more like MS to me. I am no doctor, tho. Have they done a brain MRI? I'm so
sorry for your decline. As everyone says here, keep up the PT!! And we need
to continue to push for stem cell research!
Sandy
Dear Sandy,
Thank you so much for telling about Terry walking. This is a beautiful miracle.
If you have time, please tell me how you kept his muscles from getting
atrophied all those years. Any special exercises?
I have TM or possibly MS, not sure, since five years, gradual deterioration,
now in wheelchair, unable to stand since two years. I am not paralyzed though.
I do exercises daily with legs and arms. I am using an electronic lift for
transfers and I have a caregiver day and night. I wish to know what to do to
start walking again. I believe it is possible. Your letter gives me renewed
hope.
I would love to know what Terry did to start walking, something that would help
others.
Please write!
Leila
One site has it all. Your email accounts, your social networks, and the things
you love. Try the new AOL.com today!
[TMIC] Re: tmic-digest Digest V2008 #332
hey everyone, i hope all is going well. i am s sick of this hospital. i might get to go see dr. kerr. did anyone else lose their arms and hands? i am getting all the muscles in my arms back, however not my hands. i am hoping vthey come back soon.--- On Wed, 9/10/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED]Subject: tmic-digest Digest V2008 #332To: [EMAIL PROTECTED]Date: Wednesday, September 10, 2008, 12:50 PMtmic-digest DigestVolume 2008 : Issue 332 Today's Topics: [TMIC] Re: tmic-digest Digest V2008 [ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ Jan Hargrove [EMAIL PROTECTED] ] Re: [TMIC] jude [ Jenna [EMAIL PROTECTED] ] RE: [TMIC] new friend [ wim from holland wim_from_holland@ ] Re: [TMIC] Testing 123[ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ "Diane" [EMAIL PROTECTED] ] Re: [TMIC] jude [ "L T CHERPESKI" [EMAIL PROTECTED] ] Re: [TMIC] gel cushion[ Alton Ryder [EMAIL PROTECTED] ] Display Notification: [TMIC] Re: tmi [ Rita Asbury [EMAIL PROTECTED] ] The site is tmic-list@eskimo.com .At least it as the last the time I checked.Rick -- Original message from [EMAIL PROTECTED]: -- Thanks Jim, Heather in Calgary - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: Sunday, September 07, 2008 10:13 AM Subject: [TMIC] Paralympics Athletes living with Transverse Myelitis Beijing Paralympics Athletes living with Transverse MyelitisUnited StatesSarah Castle (Wheelchair Basketball)http://www.olympicspirit.us/paralympics/39341_46582.htmhttp://paralympics.teamusa.org/athlete/athlete/1929Anjali Forber-Pratt (Wheelchair Track)http://paralympics.teamusa.org/athlete/athlete/2209http://anjaliforberpratt.com/content/aboutAmanda McGrory (Wheelchair Track Basketball)http://paralympics.teamusa.org/athlete/athlete/2217Kerri Morgan (Wheelchair Track)http://paralympics.teamusa.org/athlete/athlete/2218Steven Toyoji (Wheelchair Track Basketball)http://paralympics.teamusa.org/athlete/athlete/2205Great BritainGordon Reid (Wheelchair Tennis)AustraliaGreg Ball (Cycling)http://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=61d23790-dd7f-4d77-ad8a-ad2b10874a39Madison de Rozario (Wheelchair Track)http://www.madid.com.au/bio.htmhttp://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=725a9395-ceb6-4061-82e6-91f6ea88c337Watch onlinehttp://www.universalsports.com//SportSelect.dbml?DB_OEM_ID=23000KEY=SPID=13327SPSID=107765 http://www.cbc.ca/sports/paralympics/http://news.bbc.co.uk/sport2/hi/other_sports/disability_sport/default.stm Jim Lubin [EMAIL PROTECTED]http://makoa.org/jim disAbility Resources: http://www.makoa.org Welcome, Amanda! Sorry you have to meet us this way, but you've come to the right place. Wecome to the family!! Hugs, janh--- On Tue, 9/9/08, Amanda Diskey [EMAIL PROTECTED] wrote: From: Amanda Diskey [EMAIL PROTECTED]Subject: [TMIC] new friendTo: tmic-list@eskimo.comDate: Tuesday, September 9, 2008, 3:40 PM my name is amanda and i am newly diagnosed with tm. i am still in the hospital in rehab. hope this gets through to the list. i could use sum friends. Hi Bob, I am sorry you have been in the hospital, I hope you are feeling better now.Jude is doing ok, is the update I got today. I will check with Pam again tomorrow and she if she can give me more info. Or maybe Ella or Patti know more. Jenna - Original Message From: bob [EMAIL PROTECTED]To: tmic tmic-list@eskimo.comSent: Tuesday, September 9, 2008 12:57:00 PMSubject: [TMIC] jude how is jude doing i just spent 12 days in the hospital and just came home last evening..can i please have an update on jude?thank you Also welcome from Holland. Your friends are world wide as you see..Wim Date: Tue, 9 Sep 2008 13:40:13 -0700From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] new friend my name is amanda and i am newly diagnosed with tm. i am still in the hospital in rehab. hope this gets through to the list. i could use sum friends. Het beste van Windows, nu ook online. Deel jouw wereld met Windows Live. Download nu. it's okay in Ohio Pt...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Hi Amanda. Hope you bounce back soon. Please keep us posted. Diane in Canada - Original Message - From: Amanda Diskey To: tmic-list@eskimo.com Sent: Tuesday, September 09, 2008 4:40 PM Subject: [TMIC] new friend my name is amanda and i am newly diagnosed with tm. i am still in the hospital in rehab. hope this gets through to the list. i could use sum friends. Bob - 12 days in the hospital! How are you doing - are you ok Please give us an update. Thank you Linda - Original Message - From: bob To: tmic Sent: Tuesday, Septemb
[TMIC] new friend
my name is amanda and i am newly diagnosed with tm. i am still in the hospital in rehab. hope this gets through to the list. i could use sum friends.
