[TMIC] An update
Hi friends, A couple of months ago I left Brasil to try to remember who I was before TM..as you all know. Do you remember the little child I found with TM who changed my life? Well if not, her name is Christa Brumant who also suffer from this disease of ours from Trinidad. She is presently in Kennedy Krieger Institute . finally recieving the treatment she needs after being diagnosed 14 months ago. She is 10 years old and I honestly think she is a lot stronger than me and she taught me so much with just her smile. I know I put you guys through a hell of a lot worrying about me and now it is slightly ridiculous for me to ask you guys for a favour, but I must. Please spend some time to wish her well as she tries to get better. She is such a great kid and I love her so much, it hurts to know she suffers from this thing of ours. I'll update you guys as her treatment comes along. Regards, Jeron
RE: [TMIC] Memory Loss
Ok so I'm only 31, but this thing of ours sure does some tricks on me and my memory. I am sure that I have lost some of my most painful days as when I was in the hospital a few times are completely unknown to me now. My wife tells me a lot of stories about things that happened to me when I was out with MRSA and getting drugged up in the hospital. Apparently I had lots of conversations with her about all sorts of things, none of which I can remember. I guess it goes with the amount of horrific drugs that we all take just to make it through the day. Regards, Jeron Date: Sun, 29 Aug 2010 06:17:05 +0400 Subject: Re: [TMIC] Memory Loss From: malugss...@gmail.com To: elbobber...@earthlink.net; kimr1...@bellsouth.net; revcross...@gmail.com; tmic-list@eskimo.com Message body Absolutely, I have; This short-term memory has me mumbling to myself and thinking I am getting Alzheimer's! I do not think and have not read that TM causes this, but the meds sure do. Best, Dalton Dalton H. Garis, Ph.D. Associate Professor of Economics And Petroleum Market Behavior The Petroleum Institute P.O. Box 2533, Umm al Nar Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: bobby jim elbobber...@earthlink.net Date: Sat, 28 Aug 2010 21:10:41 -0500 To: kimr1999 kimr1...@bellsouth.net, Rev. Craig Crossman revcross...@gmail.com, tmic-list@eskimo.com Subject: Re: [TMIC] Memory Loss Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 28 Aug 2010 19:11:02 -0700 discussion.??? what discussion..? Bobby uh Jim From: kimr1999 mailto:kimr1...@bellsouth.net To: Rev. Craig Crossman mailto:revcross...@gmail.com ; tmic-list@eskimo.com Sent: Saturday, August 28, 2010 20:32 Subject: Re: [TMIC] Memory Loss all the time as a matter of fact I can't remember what we are discussing From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sat, August 28, 2010 9:12:07 PM Subject: [TMIC] Memory Loss Has anyone heard of, or experience with, a loss of short-term memory as either a side effect of TM or side effects from the meds we take for some relief? Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org http://www.firstbaptistcolby.org/
RE: [TMIC] Update on Mike
I'm so sorry to hear thisall I can offer is the thoughts and prayers of me and my wife. I hope Mike knows how much people all over the world cares for him and he feels our love and prayers in his time of need. Jeron Date: Tue, 17 Aug 2010 10:13:55 -0700 From: rn11...@yahoo.com Subject: Re: [TMIC] Update on Mike To: 3jmhamm...@clearwire.net CC: tmic-list@eskimo.com I'm so sorry to hear that. I will pray for your family. Cheryl --- On Tue, 8/17/10, Jill Hammond 3jmhamm...@clearwire.net wrote: From: Jill Hammond 3jmhamm...@clearwire.net Subject: [TMIC] Update on Mike To: Anna Jim jnawil...@roadrunner.com, Annie annielyman1...@yahoo.com, Becky Steve mcsmi...@adelphia.net, Beth Greg g...@comcast.net, Bob Beverly b.doerfl...@gmail.com, 'Boyd' b...@boydbryant.com, Carole Matteson carolematte...@hotmail.com, Char Brower charsreti...@hotmail.com, Cheryl Hammond i...@todaydata.com, Cindy Dunn cdunn53...@aol.com, Craig Candi bur...@comcast.net, 'Craig Fiore' cr...@ultra6.eskimo.com, fi...@dhs.gov, 'David and Patty Brooks' blueba...@verizon.net, 'David Gay' raega...@yahoo.com, Dennis Pam burpee...@msn.com, 'Earl Fordham' earl.ford...@gmail.com, Elaine Boos elaineb...@bellsouth.net, Eric Eri ericshamm...@hotmail.com, Fred Susan graceann1...@charter.net, Gil Mari cdav...@dc.rr.com, 'James Fulmer' jedi...@gmail.com, Jan Hlavaty-LaPosa janet.hlavaty-lap...@dhs.gov, Jim and Bobbi jimbobk...@msn.com, Johanna mjber...@verizon.net, Judy Karl romocharlo...@hotmail.com, Keenan kee...@seattlegeek.net, Kendra kwa...@comcast.net, Lenny Lisa len.l...@verizon.net, Lisa l...@lisalundt.com, Lynn Jade lynn.mari...@pfpa.mil, Mari Gary wordfromwis...@smtel.com, marie swanson swansonbythe...@comcast.net, 'Mica Ward' m...@detech.net, Mike Nancy mmccallis...@soundandsea.com, Nancy npurcell1...@yahoo.com, Noah n...@noahconrad.com, Pat Allegretti paa...@gmail.com, Pat and Corky pjgren...@hotmail.com, Pat Doebele grandmap...@comcast.net, Pat Massey patrick.mas...@dhs.gov, Paula paula.lazz...@attachmate.com, PJ pjn...@yahoo.com, Ron ron.brook...@att.net, 'Sally' sa...@bsorenson.com, Sarah Bell-Schell maeb...@vandals.uidaho.edu, 'Scott Hamilton' scotthamil...@live.com, Sharon Steve pianica...@comcast.net, 'Sheri Meyer' sheme...@cisco.com, Steve Gail crescentc...@nwi.net, Steve and Jo stevejojohn...@msn.com, Susan Ted Roth susanema...@mchsi.com, Tmic tmic-list@eskimo.com, Tom Deb t...@ddoel.com, 'vanessa Quinn' vanessa.qu...@dhs.gov, Wayne wme...@ci.everett.wa.us, Zsolt Patty zdor...@comcast.net Date: Tuesday, August 17, 2010, 11:16 AM Hello Family and Friends, Sorry to send this information over mass email, but it’s the fastest way to keep everyone informed. Over the last couple of weeks, Mike has been very disoriented, sleeping a lot and losing weight. The MRI test that he had earlier this week indicates that the cancer has spread to the brain. We are meeting w/the Oncologist today and hopefully get more answers and find out what our course of treatment will be. I’ll keep you informed as soon as we can. Keep us in your prayers….Love, The Hammond Team
RE: [TMIC] Fw: Fwd: FW: How to dance in the rain.....
Thanks, this is why I am so deeply in love with my wife. Jeron Date: Fri, 13 Aug 2010 15:49:04 -0700 From: jcs...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] Fw: Fwd: FW: How to dance in the rain. How to Dance in the Rain It was a busy morning, about 8:30, when an elderly gentleman in his 80's arrived to have stitches removed from his thumb. He said he was in a hurry as he had an appointment at 9:00 am. I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him. I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound. While taking care of his wound, I asked him if he had another doctor's appointment this morning. He said no, he needed to go to the nursing home to eat breakfast with his wife. I inquired as to her health. He told me she had been there for a while and that she was a victim of Alzheimer's Disease. As we talked, I asked if she would be upset if he was a bit late. He replied she no longer knew who he was, she had not recognized him in five years now . I was surprised, and asked him, 'And you still go every morning, even though she doesn't know who you are?' He smiled as he patted my hand and said, 'She doesn't know me, but I still know who she is.' I had to hold back tears as he left, I had goose bumps on my arm, and thought, 'That is the kind of love I want in my life.' True love is neither physical, nor romantic. True love is an acceptance of all that is, has been, will be, and will not be. With all the jokes and fun that are in e-mails, sometimes there is one that comes along that has an important message. This one I thought I could share with you. The happiest people don't necessarily have the best of everything; they just make the best of everything they have. I hope you share this with someone you care about. I just did. 'Life isn't about how to survive the storm, but how to dance in the rain.
RE: [TMIC] arghhh!!!!!!!
I for one can't blame my lack of sleep on TM. I had Insomnia for 14 years now. I take sleeping pills everynight or else I get just around 15 to 20 minutes sleep, no more. I use a drug called Doxylamine Succinate 50 mg for my sleeping problems (it's highly restricted here in Brasil, but my doctors get them for me and bring them to my house). It doesn't provide any sort of pain relief ofcourse, but with my neurontin and tandrilax it works well to keep me out for the night. The burning legs situation is different for everyone I'm sure, but I use bengay ultra or A535 for that. Give those a try, they really aren't too bad. Regards, Jeron Date: Tue, 10 Aug 2010 20:13:59 -0700 From: jcs...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] arghhh!!! bed at 8 up at 10 spasm city! more pain meds. now just burning legs. gotta be up at 4. slept 2.5 hours last night. whats this? getting sleepy. good.
RE: [TMIC] helpful hints
Ok, I'll give it a shot! why not... Jeron From: suret...@sympatico.ca To: tmic-list@eskimo.com Date: Sat, 31 Jul 2010 13:00:17 -0400 Subject: [TMIC] helpful hints good afternoon everyone (except those on the west coast where it is still morning) herein is an article that appeared in the recent Woman' World. yes i am an avid reader of said magazine for the following reasons 1) I enjoy the food recipes' why ( because I do all the cooking) I enjoy the helpful hints re cleaning ( As I do all the housecleaning) and 3) because I am extremely domesticated. here goes : Havin trouble getting past the little disappointments of the day? (quite appropiate for us tmers) Try glaspng your hands and reaching them over your head for a count of 10 .. this move shifts your thoughts upward toward your successes, reports show. However moving your body down - like touching your toes ( like Right I haven't been able to do that since puberty) -makes you feel more negative. WHY IT WORKS literature and movies teach us to literaly associate upward movements with achievement- that's why we say things like i feel on top of the world. Downward movements by contrast are linked to unpleasant experiences, such as down in the dumps explains study coauthor Daniel Casasanto,ph.d. hope this helps others as it has helped me between cooking and cleaning enjoy. Gerry in beautiful Montreal.
RE: [TMIC] Fwd: Do I like getting old?
Truely inspiring. Thanks Gunny Jeron From: bgunny7...@aol.com Date: Wed, 28 Jul 2010 12:02:20 -0400 To: Tmic-list@eskimo.com Subject: [TMIC] Fwd: Do I like getting old? --Forwarded Message Attachment-- From: lindalee5...@aol.com Date: Wed, 28 Jul 2010 08:26:10 -0400 Subject: Do I like getting old? To: a.s...@frontiernet.net; annie_...@yahoo.com; avi2...@aol.com; rba...@rpbakerfoundation.com; bgunny7...@aol.com; bonbon.marz...@gmail.com; jeannec...@cox.net; ccarli...@hotmail.com; goldi...@vic.chariot.net.au; ado...@np.k12.mn.us; ericjschlan...@yahoo.com; zi...@fuse.net; mmlhendri...@hotmail.com; patj...@fuse.net; jknapp9...@aol.com; jddrummo...@btinternet.com; themn...@comcast.net; mary.e.lof...@wellsfargo.com; gabemichae...@msn.com; bobnew...@kc.rr.com; sskluza...@hotmail.com; sheila4...@yahoo.com; debskluza...@frontiernet.net; joe...@aol.com; littleo...@aol.com; sklu...@aol.com; swampygirl1...@aol.com; atalarcz...@yahoo.com; c_talarc...@hotmail.com; warhal...@aol.com; wctalarc...@gmail.com I would never trade my amazing friends, my wonderful life, my loving family for less gray hair or a flatter belly. As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend.. I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly cement gecko that I didn't need, but looks so avante garde on my patio. I am entitled to a treat, to be messy, to be extravagant. I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging. Whose business is it if I choose to read or play on the computer until 4 AM and sleep until noon? I will dance with myself to those wonderful tunes of the 60 70's, and if I, at the same time, wish to weep over a lost love ... I will. I will walk the beach in a swim suit that is stretched over a bulging body, and will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set. They, too, will get old. I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And I eventually remember the important things. Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect. I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver. As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore.. I've even earned the right to be wrong. So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day(if I feel like it). MAY OUR FRIENDSHIP NEVER COME APART ESPECIALLY WHEN IT'S STRAIGHT FROM THE HEART! _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Thank you!
Hey Rev. Craig, Welcome to our little society! Just like so much of us, I'm sorry to meet you this way, but please know we only do one thing here and that is support each other. I know for a fact that these TMers do so much for eachother that it borders on an other worldly experience sometimes. We've all been there before and all have some value to add in any situation that we may come across and I for one can welcome whatever insight you have in terms of how you choose to deal with this thing of ours called TM. This is a remarkable group of people, please feel welcomed! Regards, Jeron P.S as our friend Gunny recently reminded us, it's not about our disability...IT'S ABOUT OUR ABILITY! Welcome friend! From: revcross...@gmail.com To: tmic-list@eskimo.com Date: Sun, 25 Jul 2010 18:49:59 -0500 Subject: [TMIC] Thank you! Wow, what a response! I just checked my e-mail and my laptop sort of hiccupped when it found all the responses. I appreciate all of you responding so quickly. As I learn more about TM (and then teach my doctor about it) I am sure I will have other questions. Luckily, the church I serve has been incredibly open and willing to work with me especially on the bad days. They even put a tall stool behind the pulpit so I can sit while I preach. The only thing they worry about is that I will be so comfortable sitting on the stool that I will preach longer sermons! Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] short story
Gunny, Good stuff as usual! What an amazing story. I am always glad to hear stuff like this, especially from a man like you. I remember the kick in the pants I got from you a couple months ago and how much it truely helped me. Now my wife and I are happy again and it only took a journey half way round the world and back to prove I can still be Jeron, just a Jeron with TM this time. Thanks again my dear friend! Jeron From: bgunny7...@aol.com Date: Sat, 24 Jul 2010 10:50:44 -0400 To: Tmic-list@eskimo.com Subject: [TMIC] short story I was just sttin here the other day lookin at something I got from another Marine. I had a though about lookin up my old DI's. I typed in thier names in my search engine, and came up with only one, Sgt. Levesque. It was a story about what happened to him in Viet Nam. I called John Brown who is the commander of the VA, who also worked with me at the Sheriff's dept. yes, he's from Youngstown. It seems Sgt. Levesque works with the blind veterans, as he lost his eye sight in Viet Nam. John told me how to get in touch with him, so I called. He answered, Don Levesque, how can I help you? Here's a man I haven't seen or talked to in forty eight years, and I got the feeling of needing to snap to, but I didn't . I said, Platton 289, F Co. Parris Island. He said, yeah, my platoon. I said Pvt. Boyle, Platoon Guide. He said, son of a bitch, how the hell are ya. I said, the question is, how are you, I read a story about you and losing your eye sight. He said, ya know Boyle, I remember you, you had your head and ass wired together..After exchanging pleasantries, we discussed disabilities, and I told him my story. He said, remember one thing Boyle, it's ability, not disability, if I taught you anything, remember that. We talked a couple more minutes then agreed to stay in contact. It got to me people, ability not disablilty. I had to hear that from an old DI of mine, so, I'm just passin it on. Semper Fi. _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] about Jude (Hey Jude)
This is so touchingthis is why we need eachother. I too am thankful to have found you guys...all of you! Jude must know how loved she is. Let's all continue to wish her well and wait for a response from her. Jeron From: patticoole...@gmail.com To: pjv1...@chartermi.net; tmic-list@eskimo.com Subject: RE: [TMIC] about Jude (Hey Jude) Date: Fri, 23 Jul 2010 10:21:45 -0500 PATTI - BE SURE TO LET JUDE KNOW THAT WE ALL DO REMEMBER HER AND MISS HER TERRIBLY. WHEN I FIRST FOUND THE TM CLUB A LITTLE OVER 2 YEARS AGO, I KNOW IT SAVED MY SANITY. I FELT SO ALONE AND NO ONE KNEW WHAT MY BODY WAS GOING THROUGH. I WAS SO DEPRESSED, I WAS THINKING OF PAINLESS WAYS TO END IT ALL. WHEN I FOUND THIS SITE, BOTH JUDE AND PAM WERE POSTING QUITE OFTEN AND THEY RESPONDED TO MY NEEDS AND MADE ME FEEL THERE WAS HOPE. I FOUND PEOPLE WHO COULD ANSWER MY QUESTIONS AND MADE ME LAUGH, ESPECIALLY PAM AND HER EMAIL JOKES SHE SENT ME EACH DAY. OH, HOW I MISS HER AND JUDE. WE WENT THROUGH PAM'S FOOT SURGERY AND ALL OF JUDES PROBLEMS WITH HER DOCTOR AND HOSPITAL WITH HER. PLEASE LET JUDE AND DAVE KNOW WE ARE PRAYING FOR THEM BOTH, AND TELL JUDE WE WILL BE WAITING FOR HER TO BE ABLE TO SEND US A POST. TIAD (FOR PAM) PATTI - WISCONSIN -Original Message- From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] Sent: Wednesday, July 21, 2010 8:23 PM To: tmic Subject: [TMIC] about Jude (Hey Jude) I talked with Jude's husband, David, this evening after receiving a message from him that she is in a hospice program. David said she went to a hospice camp for ten days and came home feeling better last week. Then she woke up during her first night home with a headache and has gone down hill from there. David said Jude has not been talkative lately, but I asked if I could visit with her tomorrow just to sit with her. I'm planning to visit in the afternoon. The last time I heard from Jude was the message that she sent Does anyone remember Jude? Patti - Michigan _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] about Jude (Hey Jude)
Pray for Jude From: jan...@centurytel.net To: pjv1...@chartermi.net; tmic-list@eskimo.com Subject: Re: [TMIC] about Jude (Hey Jude) Date: Wed, 21 Jul 2010 22:43:11 -0500 Tell her Janice, from Missouri, thinks about her and wishes her well. Janice -- From: pjv1...@chartermi.net Sent: Wednesday, July 21, 2010 8:23 PM To: tmic tmic-list@eskimo.com Subject: [TMIC] about Jude (Hey Jude) I talked with Jude's husband, David, this evening after receiving a message from him that she is in a hospice program. David said she went to a hospice camp for ten days and came home feeling better last week. Then she woke up during her first night home with a headache and has gone down hill from there. David said Jude has not been talkative lately, but I asked if I could visit with her tomorrow just to sit with her. I'm planning to visit in the afternoon. The last time I heard from Jude was the message that she sent Does anyone remember Jude? Patti - Michigan _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] OT - need prayers after seeing video will understand why
Bernie, I am so sorrythis is so sad! Your family is in my prayers. Please hang in there, remember we are not only joined by this affliction, but also by the love and caring we have for eachother. We'll get you through this, please keep us updated with all of their needs and how we can help. Regards, Jeron Date: Sun, 18 Jul 2010 03:03:23 -0500 From: bpe...@austin.rr.com To: tmic-list@eskimo.com Subject: [TMIC] OT - need prayers after seeing video will understand why Yesterday my ex wife and daughters duplex went up in flames. It started in their neighbors part, unknown origin as of right now as to the cause. Please keep them in your prayers, Red Cross has them in a hotel for 5 days and then they are on their own. It was a total loss, and that was their car too that was melted to nothing. Both are disabled; Sara has auto immune like me, Sally my ex wife lost 2/3's of her right lung and both breasts to cancer and they are worried it is in her lymph glands. And now this... Life is cruel... http://www.youtube.com/watch?v=-N93sIqERB0 _ Hotmail: Powerful Free email with security by Microsoft. https://signup.live.com/signup.aspx?id=60969
[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. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] 2010 - Here we go again!
Hey Roger, Hang in there buddy! Just when we think things can't get worse for us TMers, TM throws us a curve ball. I took the opportunity to read up on this disorder and I am in shock that there are so much things that are always going to be heading our way because of TM. My thoughts and my prayers are with you friend...always Regards, Jeron From: r.c.pr...@verizon.net To: tmic-list@eskimo.com Date: Tue, 29 Jun 2010 17:15:28 -0700 Subject: [TMIC] 2010 - Here we go again! Here it is almost the 4th of July, 2010, I haven’t written in a long time, and here I am again at a major turning point in my life. It all started in mid-February. While on vacation in Mexico, my right foot started hurting. “More fun and after-effects from my Transverse Myelitis,” I thought, and I resolved to see my neurologist when we got home. I had recently stopped a medication she had put me on for nerve pain that had horrible side effects and also had what seemed to be a spider bite on my right leg. “Something minor,” I thought. By the time I got to the doctor, my right foot started to swell. She had an ultrasound done of the blood vessels in my legs to check for blood clots, and then my left foot and ankle started to swell. Then my right hand went numb and I lost use of two of my fingers. As pain and swelling increased, I went through five MRIs of my spine and brain, a spinal tap, other miscellaneous tests, and handfuls of pills (mainly pain pills that just made me sicker). After much delay, my doctor sent me to an MS specialist in Seattle, who confirmed that my doctor was, as she had said before sending me, “clueless”, and that she (the doctor in Seattle) didn’t know what it was either. By this time I started having muscle loss in my right hand and was generally losing weight all over. Finally on the 7th of June I was sent to a doctor in Walla Walla who specializes in peripheral nerve disorders. He did a nerve conductivity test and diagnosed me as having a rare autoimmune disorder called Mononeuritis Multiplex that attacks peripheral blood vessels and nerves. I am now on steroid IVs once a week and am taking a drug called Imuran which suppresses the autoimmune system that should stop the progression of the disorder. This will probably take a long time and may not reverse all the damage. I may have to be on Imuran for the rest of my life. For now it’s just wait and see. _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] forgot to say that I'm home
Glad to hear you're back! It's amazing that you travelled so far! I'm sorry about the pneumonia bout though and I pray all is well now. I myself have completed three legs of my journey. I'm off to Tobago to do some more scuba diving and some deep sea fishing out in the atlantic ocean. It's been exhilirating thus far, but the after effects are a bit too painful sometimes, but the good kind.the kind that reminds you that you're alive. I have to try to remember to push myself to my personal limit and no further, but I guess when the adrenaline is pumping nothinng really matters and TM disappears if even only for a few minutes. I know your trip was worth it and I know you pushed yourself too, so good for you! Congratulations! There is life after TM! Regards, Jeron From: jan...@centurytel.net To: tmic-list@eskimo.com; balmat...@aol.com Subject: Re: [TMIC] forgot to say that I'm home Date: Fri, 28 May 2010 22:02:15 -0500 Glad you are home and that you had such a fun and successful trip. Will be expecting more from you now! Janice From: Barbara Alma Sent: Friday, May 28, 2010 6:35 PM To: tmic-list@eskimo.com Subject: [TMIC] forgot to say that I'm home I'm sorry that I forgot to tell you all that I arrived safely home late on Friday, May 21st. We managed to put 7608 miles on our van and enjoyed practically the entire trip. It really was a great trip, and was almost without incident. With regard to health problems: I fared really well, other than a bout of pneumonia and a night in the hospital in Colorado. This sounds bad, but I have gotten pneumonia at home many times. It was worse getting it on the road, as it has taken me so much longer to recuperate than usual, so that's the worse part. It also made the last week and a half of our trip a bummer, without much fun. No gambling in Vegas since I couldn't handle the smoky casinos, but that probably saved me some money. We managed to see 2 shows though. I had about 7 days out of 46 of laying in bed, resting my back overall. Not too bad, but they were spread out. We managed to see family and friends that we hadn't seen in several years, did things that we didn't know existed, and went to states that we had planned on visiting, but didn't really know when we'd do it. All this because our god-daughter planned her wedding. So, right after this, I'm going to call her and thank her for planning her wedding and for us having the opportunity to push my inner thoughts into planning this wonderful trip. She really didn't have any awareness of this when she planned it, but my mind started to wander, I only wondered if I could handle it. I wholehearted recommend to anyone who really wants to do any kind of a journey, whether it's a days drive or whatever, to give yourself the chance. We stopped often, whenever I felt that I needed to, sometimes every hour, sometimes in 2 hours, but I did it. We've done short trips in the past, and I did much better this time as it allowed for more relaxation since we had more time. Hugs, Barbara A in Auburn CA _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Newly Diagnosed and Need Guidance
Hey Ruben, I, as most of us here, can empathise with your situation. It is very costly and the burden becomes unbearable. We've all been there. I'm sure someone on our list must be able to help you get the financial support that you need. The rest of us can give you the emotional support that you need. That's what we do here. You have hundreds of shoulders to cry on anytime you need to. With regards to your other queries I think we can all say that TM manifests itself in different ways and affects us all differently. My advice to you is to see someone about the depression and the anxiety. There are drugs out there that can help. We all have battled through the rough times, I myself was in a bit of a crisis recently and only with the help of my TM family I am managing to trudge on. I truely hope you find the help you need. Regards, Jeron From: rdtow...@southernco.com To: tmic-list@eskimo.com Date: Fri, 28 May 2010 06:16:09 -0500 Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] music
Wow, simply awesomefound some of his stuff on youtube. Date: Thu, 27 May 2010 13:38:49 -0700 From: hwyfli...@yahoo.com Subject: Re: [TMIC] music To: bgunny7...@aol.com; Tmic-list@eskimo.com Dang Gunny...I just pulled up his website and listened to some tracksthis guy straight out rips some blues... He's good..!! Pretty awesome that your brother taught him... From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Thu, May 27, 2010 3:23:47 PM Subject: [TMIC] music Anybody on the list living in the Tacoma Washington area, there's a kid from my hometown named Nick Vigarino playing in your area. He's about the best blues guitar player I've ever heard. If you get a chance, check him out. My brother Mike who recently died of brain cancer, taught Nick how to play. Believe me, you wont be dissapointed. _ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] alive
well said Janicethe hell with TM! lol live and then live with the consequences From: jan...@centurytel.net To: barbara...@gmail.com; rumc...@hotmail.com CC: tmic-list@eskimo.com Subject: Re: [TMIC] alive Date: Sat, 22 May 2010 14:15:46 -0500 Barb, I do like you do.If I have a few days that I know are going to be busy, I do it anyway knowing that for a couple of days after I will have to sit a lot and will be sleepy for good ole' vicotin.But, you just have to push and do what you want to do even though you know there will be consequences. The hell with TM!! Janice From: Barbara H. Sent: Saturday, May 22, 2010 9:57 AM To: j ra Cc: Transverse Myelytis Subject: Re: [TMIC] alive Hi Jeron, Thanks for the further insight. Though you don't owe any of us an explanation, this does help us understand more. I have known of people who did push loved ones away and close up within themselves, and that's what I thought you were doing from your first note, thus my response. And I don't see it as a can of worms. For the most part it has been a great discussion, I've enjoyed reading the responses and the way TMers step up to support each other. There is no handbook and no one right way to deal with TM -- that varies with each of us according to how we're affected physically as well as personality type, family support, etc. Personally, I would never have survived without faith in God and His Word to help me each day. But reading all these different responses helps each of us to gain more insight and encouragement in dealing with TM on our own terms. I have to admit that diving and ziplining and such are not things that would appeal to me even without TM :-) But I am glad you're having the opportunity to experience them. And I do understand the need to challenge ourselves. The challenges I choose are different, but if I don't keep some challenges in front of me I would be curled up in a little ball inside my house and never move. In the early days of TM, any excursion or activity beyond just the function of daily living would leave me exhausted and with a flare-up of symptoms the next day. But, as you said, it is worth it, and for me, though it still happens, it is less direct. In fact, sometimes I forget the correlation. I am coming up on my fifteenth anniversary with TM in September. Last weekend I was in charge of our church's annual ladies' luncheon. In the preceding weeks of preparation, I almost always tell myself, I am NEVER doing this again. Am I crazy, or what? But it is a joy to see it all come together. Then this week I was having some major back pain and elimination issues and could not sit still for very long without falling asleep, and I was wondering what in the world was going on. Then I had a Duh! smack myself upside the head moment of realization that all that pressure and stress, even though it was a good kind of stress, was exacting its payback this week, so then I could just relax and go with it and give myself permission to sleep a little more and not hope for a very productive week this week. Anyway -- I wish you all the best. Barbara H. On Fri, May 21, 2010 at 5:23 PM, j ra rumc...@hotmail.com wrote: Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal
RE: [TMIC] CYBER-thon to benefit TMA on June 8th
damn...this is so cool! It took me 6 months to learn to walk again, so I'm in guys. Jeron Date: Sat, 22 May 2010 18:52:56 -0700 To: tmic-list@eskimo.com From: jlu...@myelitis.org Subject: [TMIC] CYBER-thon to benefit TMA on June 8th I am helping Sally Franz (a TM survivor) with her CYBER-thon which will benefit The Transverse Myelitis Association. This is for real and it’s worth checking out. See what you think… (more details at http://www.ScrambledLeggs.net ) On Tuesday, June 8th award winning humor author, Sally Franz is giving away $200 of FREE cool stuff to everyone with her launch of her Amazon Best Seller humor book (or Kindle), Scrambled Leggs...A Snarky Tale of Hospital Hooey. It’s all a part of a huge Cyber-thon for charity. Also, read to the bottom about a FREE Writers Workshop. But first… A QUICK QUIZ: Say you’re going into a hospital. You need a great doctor, good insurance and what other one thing to make sure you get out alive? Answer: Mr. ‘T’ in scrubs (aka a Patient Advocate Ninja, someone to watch your pills, your personhood and property while you are drifting off to La-la Land). Wait until you see what goes on after Visiting Hours… BOOK SUMMARY: Sally was paralyzed from the waist down and had to learn to walk again. But that was the easy part. Dealing with the hospital staff, that was scary. So she wrote it all down in a hilarious tale of ‘helpers’ who ranged from dangerous to delusional (picture Nurse Ratchet on steroids). Funny, inspirational and a major lampoon on the health care system; you will love this ‘laugh-out loud’ book. Don’t leave home without it. CELEBRITY QUOTES: Comic genius Jonathan Winters says, “Sally Franz is VERY funny.” Dave Barry sends, “Congrats on your (new) book, best of luck.” Mark Victor Hansen, Jayne Meadows (Mrs. Steve Allen), Linda Bloodworth-Thomason (Designing Women) all praise her writing. Doctors, nurses and patients are raving about this book! Find out why. FREE STUFF: Tuesday, June 8th go to http://www.ScrambledLeggs.net , buy “Scrambled Leggs” and 20% goes to charity. And to thank you there will be a super-sized Cyber-Goody-Bag of downloadable FREEBIES with over $200 worth of very cool stuff: 20 humor posters, “Rave Recipes” cookbook, 5 full e-books, tips on humor writing, interviews with top writers and book excerpts. It all comes with the purchase of only 1 book (around $15.00). I know! Go to http://www.ScrambledLeggs.net to check this out. 2IT’S FOR CHARITY: Yup, it’s a Cyber-thon for charity! A full 20% of book proceeds are going to 2 fabulous charities: 10% goes to “The Transverse Myelitis Association” (education and research for rare neuro-immune disorders) and 10 % of book proceeds go to “Operation First Response” (helping returning Wounded Warriors) ALSO: FREE WRITERS WORKSHOP: Anyone can join this. JUNE 8th, come to the FaceBook group Scrambled Leggs. (If you can’t find it go to FaceBook: Sally Franzshe’s the one with pink, green and blue confetti coming out of her head), she will get you over to the Scrambled Leggs group. This all day workshop IS the real deal (not one of those cheesy sales pitches thinly disguised as a seminar). It is a whole day of online chatting about the process of writing from idea, to publishing, and marketing. If you miss it the posts will be up for a while. Mark this on your calendar. It starts 8am EST and ends 8pm EST. And of course there will be a few challenges for Limericks, 55 word novels and more. TUESDAY, June 8th. Thanks, P.S. PASS IT ON! Would you share letter this with your entire e-list and tell them to share it with their e-lists and so on and so forth. Help raise thousands of dollars for these two Charities. TUESDAY, June 8th. http://www.ScrambledLeggs.net _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Living life on your own terms - accepting TM???
oh hell yeah, I'm there now! I can't feel anything under my feet, but I'm a walker. Somehow when the sand gets between your toes in the warm Caribbbean sand, you can actually feel it. It's amazing. Warm, wet and new.what we all TMers need. I'd like to walk barefoot in some snow soon though.feel the difference. Jeron To: jan...@centurytel.net; tmic-l...@eskimo.net Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Date: Sat, 22 May 2010 23:45:29 -0400 From: balmat...@aol.com For all who love the beach: we have found that there are some beaches that have very large wheelchairs that have huge plastic wheels that go very well on sand. We've seen these in San Diego, Florida and on private islands that the cruise companies have in the Bahamas. It makes it possible to be at the beach at least, they can go into the water also. Picture a Lily Tomlin chair made of PVC pipe, quite fun! I loved it. I have tried in the past walking in dry sand on my crutches and it moves too much for me so I couldn't do it. I've walked with 2 men holding my arms and that's very hard, but once I get on the hard, wet sand I'm in better shape and can do better with help. It only takes a very weak and I mean the weakest kind of wave you can imagine to knock me over unless I get into at least waist high water, but I love it. The caribbean water is the best, nice and warm and clear. It's worth it all to me to be able to experience the beach. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sat, May 22, 2010 8:58 am Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Janet, you are right on the money. I, too, used to think is this really happening? Life is not the same, but it is life and I am surrounded with a great family and great friends. I am adjusting to the fact that we will not be doing any more beach vacations.Walking on sand would be too difficult and exhausting. But, we are thinking of other places that we can go. It took 3 years to get to where I could travel and I love it, but I have to be picky about what we do. I hate this more than I can say, but I do still have a life and I still do things - dinner with friends, movies, etc. Pain level is not so bad right now, but there is no warning when the legs will give out on me. Life is truly full of surprises. Love you all, Janice From: Barbara Alma Sent: Saturday, May 22, 2010 2:05 AM To: j.d...@shaw.ca ; tmic-list@eskimo.com Subject: [TMIC] Living life on your own terms - accepting TM??? Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes
RE: [TMIC] alive
Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support. I love you guys very muchyou are my family! Jeron _ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
[TMIC] alive
Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] alive
I truely appreciate everything that you each said to me about this. I guess it killed me a little inside when I saw what I was doing to my wife and the pressure she was under. I live in Brazil and I have a lot of faith in my team of doctors, but being a 10 on a pain scale of 1-10 everyday is so hard. I do see a psychiatrist and don't believe I'm suffering from depression. It's just that before this I lived a really adventurous lifestyle. I Sky-dived, scuba-dived, spear-fished, hunted, rappeledlived off adrenaline. Now I can't even get off the damn bed without tipping over. So, I came up with the idea to move to the caribbean by myself, just to see if I can dive again or do anything with this level of pain and get by. I am forcing myself to pick up my old lifestyle, but I really want to do it without meds and the look of my wife's face as I try to live and feel alive again. I think the only time I ever truely felt alive was when I first jumped out of an airplane at 12000 feet or when I shot my first 50 lb Grouper at 75 feet below sea level. I miss that. I want that again so bad. TM took everything I loved away from me, but gave me a remarkable appreciation for the life I once had. Guys, I'm just trying to do this for a couple of months.challenge myself to go it alone, pretend it never happened. Use a cane and get around with my pain for a bit and sky-dive again, hunt againmaybe this is all very dangerous, but I have to do it for ME! I know getting off meds cold turkey was a bad ideaI feel it now as I type this, but I hate feeling so damned drugged up all the time. So, I selfishly chose adrenaline, at least for another 2 months or so..believe or not, my wife supports the ideabecause she knows that I miss being Jeron. I refuse to be just a TM patient. Pain level today, honestly, 9 out of 10. I'm going scuba-diving in Tobago tomorrow with pain and a spear-gunjust to feel alive one more time. Jeron _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
[TMIC] Mother's Day!
Happy Birthday to you May babiesand also Happy Mother's Day to all you mothers!! Enjoy your day! May it be pain-free! Jeron _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Amytretaline (sp)
I used it too, didn't work out too well for meIt is called Amytryptaline here in Brasil. I still take gabapentin and neurotin, valium, cymbalta and miosan plus prescription sleeping pills. What a cocktail, but never had any depression or suicidal thoughts. I do see a psychologist every week though. Jeron From: cindymcle...@socal.rr.com To: tmic-list@eskimo.com Subject: Re: [TMIC] Amytretaline (sp) Date: Mon, 26 Apr 2010 13:50:46 -0700 I also had horrible blurred vision. I went off of it because of that, but my vision had changed so much my eye doctor couldn't believe it. And the dry mouth was miserable. Rather deal with the bladder problems than Ditropan. - Original Message - From: Laura Beaudin laura.beau...@gmail.com To: Laurie Zissimos lziss...@aol.com Cc: pieterheat...@shaw.ca; regina...@sbcglobal.net; tmic-list@eskimo.com Sent: Monday, April 26, 2010 10:45 AM Subject: Re: [TMIC] Amytretaline (sp) Tried Ditropan and failed miserably with it...it works well, but boy, talk about a dry mouth!! Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! Buying a used wheelchair? BUYER BEWARE!!! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 26/04/2010 11:40 AM, Laurie Zissimos wrote: I take Elavil 25 mgs each night and I take Lyrica 150mgs 3x daily. The Elavil was prescribed for me for bladder control. I also take Ditropan XL 20mgs at night. The Ditropan and the Elavil keep me dry all night. Laurie in Baltimore -Original Message- From: Pieter and Heather pieterheat...@shaw.ca To: Regina Rummel regina...@sbcglobal.net; tmic-list@eskimo.com Sent: Mon, Apr 26, 2010 1:35 pm Subject: Re: [TMIC] Amytretaline (sp) Regina, OMG.I didn't realize that Amytriptilene was actually Elavil. I too was put on that for a short while back in the 70's for depression. I too felt 'right out of it' or 'stoned'. I couldn't take it then and guess I will just stick with the Neurontin. Heather in Calgary - Original Message - *From:* Regina Rummel mailto:regina...@sbcglobal.net *To:* tmic-list@eskimo.com mailto:tmic-list@eskimo.com *Sent:* Monday, April 26, 2010 10:34 AM *Subject:* [TMIC] Amytretaline (sp) Hi Jill, I took it years ago for depression and OMG, it was awful! The best way I can describe it is that I felt stoned. It was called Elavil then. In those days, they gave it to people in nursing homes to keep them quiet. But everyone reacts differently, so try it and let us know what happens, something good I hope. I take Neurontin but decided on my own to gradually decrease the dose, and eventually stop taking a medication that I believe bogus. So far, I see no difference in the pain and the darned TM symptoms. Good luck with the Elavil. R _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Suicide Inducing Drugs?
I for one have horrible side-effects with Lyrica. I actually turn near blue with this drug. I would say it works though. I am comfortable with neurotin and gabapentin together. I also take Seroquel and sleeping pills and my pain is reduced a bitenough to get by. Jeron From: n_...@hotmail.com To: we4king...@verizon.net; tmic-list@eskimo.com Subject: RE: [TMIC] Suicide Inducing Drugs? Date: Wed, 14 Apr 2010 13:41:49 -0300 I never seem to find time to write to the list these days but had to offer my thoughts on the issue of neurontin. I have had tm for close to ten fun filled years now and the best pain relief I have found has come from neurontin or lyrica. I took neuronitin for a few years before switching to Lyrica. They work very well for me and I haven't killed myself.not even once. Neil (in NS) CC: we4king...@verizon.net From: we4king...@verizon.net Subject: Re: [TMIC] Suicide Inducing Drugs? Date: Tue, 13 Apr 2010 18:56:14 -0400 To: tmic-list@eskimo.com I found the articles refered to by NPR: http://www.reutershealth.com/archive/2010/04/13/eline/links/20100413elin006.html http://latimesblogs.latimes.com/booster_shots/2010/04/anticonvulsants-suicide-risk-gabapentin.html I have never been on Gababentin/Neurontin but the relief I get from Lyrica was worth the month of side effects I went through to get to relief (the makers acknowledge lyrica's temporary suicide risk and has information for patients and doctors). Anti depressants also carry a risk of increased suicide until the user adjusts. the suicide risk is also temporary and passes when the taker adjusts. It is good to know that this is a possibility so that doctors, patients and their family's can monitor the patient for such a side effect but if you do the math the risk is very small and keeping an eye on it can lower the risk even more. more worrisome to me is the crackdown of off label uses of medications like these 2 drugs that so many of us off label users find so helpful. Mindy the artisan On Apr 13, 2010, at 4:18 PM, Akua wrote: neurontin and gabapentin (sp) just on NPR didn't hear it all but something about suicide... for those on it, you might want to check it out. I remember refusing Neurontin for my pain while in the nursing home, because of side effects and being chastised and derided for my decision repeatedly. I am so grateful I resisted the pressure. With depression as an attendant to TM, suicide inducing chemicals are a burden we don't need. -- Videos that have everyone talking! Now also in HD! MSN.ca Video. _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Walk Aide
I'm doing physiotherapy again right now, one hour per day, I see little improvements, but notthing to shout about yet. I started aqua therapy and it really is enjoyable being in the water again as I was a Scuba diver. From: jan...@centurytel.net To: rumc...@hotmail.com; hwyfli...@yahoo.com; toddtm2...@sbcglobal.net; tmic-list@eskimo.com Subject: Re: [TMIC] Walk Aide Date: Sun, 4 Apr 2010 22:15:18 -0500 Jeron, Can you get into physical therapy? You have probably done that before, but maybe at this point more can be done. Janice From: j ra Sent: Sunday, April 04, 2010 6:55 PM To: hwyfli...@yahoo.com ; toddtm2...@sbcglobal.net ; Transverse Myelytis Subject: RE: [TMIC] Walk Aide Good night everyone, I just out of the hospital for the 6th time in the almost 2 years of TM. I used the walk aide for some time when I was learning to walk again, but found it very difficult too, especially around tight corners. I'm using cruches now, but I still drag my right leg along. I have 20% of mobility in it, which for me is a God given gift considering all that has been taken away by TM. I find the crutches useful, but I still fell I should revert back to the chair because I have dizzy spells from time to time and there are only so many places on my arms and hips left to bruise when I fall/collapse. Does anyone have any advice as to how long I should keep trying the crutches? should I go back on the chair or should I just fo physio until I could walk on my own again. Jeron Date: Sun, 4 Apr 2010 15:41:22 -0700 From: hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: toddtm2...@sbcglobal.net; tmic-list@eskimo.com Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries
RE: [TMIC] Walk Aide
Good night everyone, I just out of the hospital for the 6th time in the almost 2 years of TM. I used the walk aide for some time when I was learning to walk again, but found it very difficult too, especially around tight corners. I'm using cruches now, but I still drag my right leg along. I have 20% of mobility in it, which for me is a God given gift considering all that has been taken away by TM. I find the crutches useful, but I still fell I should revert back to the chair because I have dizzy spells from time to time and there are only so many places on my arms and hips left to bruise when I fall/collapse. Does anyone have any advice as to how long I should keep trying the crutches? should I go back on the chair or should I just fo physio until I could walk on my own again. Jeron Date: Sun, 4 Apr 2010 15:41:22 -0700 From: hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: toddtm2...@sbcglobal.net; tmic-list@eskimo.com Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The
RE: [TMIC] Still in the Hospital
Thanks Catherine, I needed that. May I ask, does your pain come when it's very humid? Date: Thu, 1 Apr 2010 01:24:16 -0700 From: camoa...@yahoo.com Subject: Re: [TMIC] Still in the Hospital To: jan...@centurytel.net; tmic-list@eskimo.com Jeron, You are in my thoughts and prayers. I am in Massachusetts with all the flooding and I too, am in terrible pain!! God Bless You, Feel better soon, Catherine Life is short, Break the rules sometimes, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile From: Janice Nichols jan...@centurytel.net To: j ra rumc...@hotmail.com; hwyfli...@yahoo.com; rp...@neillsupply.com; Transverse Myelytis tmic-list@eskimo.com Sent: Wed, March 31, 2010 5:12:53 PM Subject: Re: [TMIC] Still in the Hospital Weather You got it! Janice From: j ra Sent: Wednesday, March 31, 2010 12:51 PM To: jan...@centurytel.net ; hwyfli...@yahoo.com ; rp...@neillsupply.com ; Transverse Myelytis Subject: [TMIC] Still in the Hospital Hey guys, It's 10 days now and I'm still stuck in an ICU. It's confirmed that it is recurrent TM. Right now they are just treating pain and trying to manage symptoms. So say a prayer for me, or keep me in your thouhgts. Yours, Jeron From: jan...@centurytel.net To: hwyfli...@yahoo.com; rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] Weather Date: Wed, 31 Mar 2010 11:44:40 -0500 I am used to definite changes of seasons, but I could really be tempted by a place that I would find comfortable physically. Hope you get there soon. Janice From: kevin weilacher Sent: Wednesday, March 31, 2010 11:36 AM To: Janice Nichols ; Robert Pall ; tmic-list@eskimo.com Subject: Re: [TMIC] Weather Janice, To me, it is an ideal place and as I said, I WILL be moving there someday. It is the desert, so you have to like the desert, which means that there isn't as much greenery for those that are used to it and of course the change of seasons isn't as evident. If you can get past those kinds of things...it's a pretty great placemy opinion of course.. Kevin Weilacher N.E. Ohio (Canton) From: Janice Nichols jan...@centurytel.net To: kevin weilacher hwyfli...@yahoo.com; Robert Pall rp...@neillsupply.com; tmic-list@eskimo.com Sent: Wed, March 31, 2010 10:12:59 AM Subject: Re: [TMIC] Weather Kevin, Alamogordo sounds wonderful!I didn't know they had places like that. Janice From: kevin weilacher Sent: Tuesday, March 30, 2010 9:42 AM To: Robert Pall ; tmic-list@eskimo.com Subject: Re: [TMIC] Weather One other thing too, I notice that you are in NJ Rob, and as you can see I'm in Ohio. Many of us are in the cold part of the country and have these issues. I am, as soon as I possibly can, going to move back to the southwest. I lived in a town called Alamogordo New Mexico back in the 80's and it had the most ideal weather of anywhere I've ever seen and I've lived in a lot of places after spending 20 years in the Air Force. Average annual high temp of 76 degrees, average annual low temp of 47 degrees, 11 inches total precipitation per year and 4 inches of snow per year. Humidity averages only about 50% year around and also about 80% days of sunshine a year. The elevation is about 4,000 feet and within a 20 minute drive you can go into the mountains and be over 9,000 feet and have all the snow you want and it is 20 degrees cooler. Plus, I love southwest style cooking. As much as Ohio and PA are home to me because this is the part of the country where I was born and raised and where my family is, they can keep it. I'm tired of cold, snow and all the rest of the mess that goes with it. Kevin Weilacher N.E. Ohio (Canton) From: Robert Pall rp...@neillsupply.com To: kevin weilacher hwyfli...@yahoo.com Sent: Tue, March 30, 2010 9:08:11 AM Subject: RE: [TMIC] Weather Thanks Kevin...just one more lousy side effect of TM! Rob From: kevin weilacher [mailto:hwyfli...@yahoo.com] Sent: Tuesday, March 30, 2010 10:06 AM To: Robert Pall; Transverse Myelytis Subject: Re: [TMIC] Weather Hi Rob and all, Yes, I think all of us TMr's should band together to become meteorologists. I think we could probably be better weather predictors than the weather folks on TV. What I have found now in the close to two years of TM, in the summertime I can tell even the slightest change in humidity and barometric pressure. In other words, if there is a storm brewing, my legs will let me know because they ache like no tomorrow. The humidity drives me nuts because now with TM the only part of me that sweats is my head and it sweats profusely, probably to make up for the rest of my body not sweating anymore. In the winter with the cold, the pain level multiplies many
RE: [TMIC] April birthdays
Happy birthday April TMers! Jeron, Rio de Janeiro, Brazil _ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
[TMIC] Still in the Hospital
Hey guys, It's 10 days now and I'm still stuck in an ICU. It's confirmed that it is recurrent TM. Right now they are just treating pain and trying to manage symptoms. So say a prayer for me, or keep me in your thouhgts. Yours, Jeron From: jan...@centurytel.net To: hwyfli...@yahoo.com; rp...@neillsupply.com; tmic-list@eskimo.com Subject: Re: [TMIC] Weather Date: Wed, 31 Mar 2010 11:44:40 -0500 Weather I am used to definite changes of seasons, but I could really be tempted by a place that I would find comfortable physically. Hope you get there soon. Janice From: kevin weilacher Sent: Wednesday, March 31, 2010 11:36 AM To: Janice Nichols ; Robert Pall ; tmic-list@eskimo.com Subject: Re: [TMIC] Weather Janice, To me, it is an ideal place and as I said, I WILL be moving there someday. It is the desert, so you have to like the desert, which means that there isn't as much greenery for those that are used to it and of course the change of seasons isn't as evident. If you can get past those kinds of things...it's a pretty great placemy opinion of course.. Kevin Weilacher N.E. Ohio (Canton) From: Janice Nichols jan...@centurytel.net To: kevin weilacher hwyfli...@yahoo.com; Robert Pall rp...@neillsupply.com; tmic-list@eskimo.com Sent: Wed, March 31, 2010 10:12:59 AM Subject: Re: [TMIC] Weather Kevin, Alamogordo sounds wonderful!I didn't know they had places like that. Janice From: kevin weilacher Sent: Tuesday, March 30, 2010 9:42 AM To: Robert Pall ; tmic-list@eskimo.com Subject: Re: [TMIC] Weather One other thing too, I notice that you are in NJ Rob, and as you can see I'm in Ohio. Many of us are in the cold part of the country and have these issues. I am, as soon as I possibly can, going to move back to the southwest. I lived in a town called Alamogordo New Mexico back in the 80's and it had the most ideal weather of anywhere I've ever seen and I've lived in a lot of places after spending 20 years in the Air Force. Average annual high temp of 76 degrees, average annual low temp of 47 degrees, 11 inches total precipitation per year and 4 inches of snow per year. Humidity averages only about 50% year around and also about 80% days of sunshine a year. The elevation is about 4,000 feet and within a 20 minute drive you can go into the mountains and be over 9,000 feet and have all the snow you want and it is 20 degrees cooler. Plus, I love southwest style cooking. As much as Ohio and PA are home to me because this is the part of the country where I was born and raised and where my family is, they can keep it. I'm tired of cold, snow and all the rest of the mess that goes with it. Kevin Weilacher N.E. Ohio (Canton) From: Robert Pall rp...@neillsupply.com To: kevin weilacher hwyfli...@yahoo.com Sent: Tue, March 30, 2010 9:08:11 AM Subject: RE: [TMIC] Weather Thanks Kevin...just one more lousy side effect of TM! Rob From: kevin weilacher [mailto:hwyfli...@yahoo.com] Sent: Tuesday, March 30, 2010 10:06 AM To: Robert Pall; Transverse Myelytis Subject: Re: [TMIC] Weather Hi Rob and all, Yes, I think all of us TMr's should band together to become meteorologists. I think we could probably be better weather predictors than the weather folks on TV. What I have found now in the close to two years of TM, in the summertime I can tell even the slightest change in humidity and barometric pressure. In other words, if there is a storm brewing, my legs will let me know because they ache like no tomorrow. The humidity drives me nuts because now with TM the only part of me that sweats is my head and it sweats profusely, probably to make up for the rest of my body not sweating anymore. In the winter with the cold, the pain level multiplies many times. I can hardly stand to go outside for more than a few minutes and a ride in the car, even with the heater on, is sometimes almost unbearable. Also the cold makes my legs stiffen up like boards. A short walk to the end of the driveway to get the mail and then back to the house and I'll have a hard time stepping up the two small steps into the house. My knees will not want to bend, I'll literally have to grab ahold of the door frame and pull myself up into the house. Oh, and by the way, I use a cane to get around. I have pretty bad foot drop on my left foot but wear a brace for that. Now, right now during this time of the year I'm not noticing too many issues other than some of the normal pain and also in the Fall when the weather is decent, I don't have too many problems then either, other than the normal ones. So, I guess to answer your question, as far as I'm concerned, the weather does raise some problems with TM. Best to you, Kevin Weilacher N.E. Ohio (Canton) From: Robert Pall rp...@neillsupply.com To: Transverse Myelytis tmic-list@eskimo.com Sent: Tue, March 30, 2010 8:29:31 AM Subject: [TMIC] Weather We are getting a huge
RE: [TMIC] Hospital
Those were my thoughts exactly. My first onset of TM was in September 2008 then being officicially diagnosed with TM in October 2008. I walked out of the hospital in April 2009, and was fine up until February 2010. The material given to me was just research material to get me to understand what we could be dealing with, I just wanted to share with you guys the stuff about us! Thanks again for your love and support. Date: Thu, 25 Mar 2010 16:06:24 -0700 From: dca...@earthlink.net To: rumc...@hotmail.com; jan...@centurytel.net; rp...@neillsupply.com; tmic-list@eskimo.com Subject: RE: [TMIC] Hospital Hello Jeron, I can't explain to you why you have had a recurrence of TM, if that is what you had, rather than an increase of symptoms due to an infection that you are fighting. But I would like to suggest that your doctors do a little bit more research before giving you those websites. Only one of them, from the TMA, has the important information that should be read about transverse myelitis. The other two websites are about research of transcendental meditation, rather than transverse myelitis. Although it might help to calm your inner soul, or whatever relief that this does provide for you, it will definitely not give you any answers as to why you have been diagnosed with recurrent transverse myelitis. Hope this info helps you to understand that these ten doctors just might not be actually READING those websites before passing on the information to you, their patient. Take care, Debbie -Original Message- From: j ra Sent: Mar 25, 2010 5:29 AM To: jan...@centurytel.net, rp...@neillsupply.com, Transverse Myelytis Subject: RE: [TMIC] Hospital Dear Friends, Last night I had a couple of bad episodes. Pain spasms running from my skull to my inflammed spine down to my right leg. The neuro-electric shocks lasted a few minutes each time, sometimes 10 minutes. I was treated with several drugs intraveniously, but valium finally did the trick in a large dosage. I have this onset of the TM recurrence and for the life of me, I can't figure out why? Maybe I tried to rush back to work too early last time, or maybe I just pretended to be normal when I clearly wasn't. Maybe I should have not lied when I kept telling people I'm fine. Now, I had my doctors up all night doing research, all 10 of them, this is some of the material they gave me: 1. http://fairfield.freehosting.net/97sept/tm-research.html 2. http://www.myelitis.org/abouttma.htm (these are you, my friends!they laughed because I always told my doctors about you guys) 3. http://www.behind-the-tm-facade.org/transcendental_meditation-tmresearch-problems.htm So, if you're up to having a read, please cut and paste each in a browser. I literally just did an ECG and I am hooked up to a automated dripper machine, Fentanil, Ringers and another drip that is unfortunately in code so I can't tell what it is. I also have an automated blood pressure kit attached to my right arm that comes on every 50 minutes. I'm on a 5 point (chest) Dixtal Monitor Portal for heart complications (last time my heart stopped for a minute and 47 seconds) as well. A catherter has also been inserted now for 4 days, so I can't wait to start educating it (clamp and release every 3 hours). No bowel movement for 5 days, which in itself is nonsense because as I remember 3 days was pushing the envelop of danger. So, I preparing now for an enema. I'm back on high dose cortisone for 7 days, weaning off slowly after that, so let's see if it works this time. The big worry is my right leg as i have a motion/force scale of 2, with inability to stand and lean on it when sitting, which causes pain scale 10 on my herniated discs. One of these discs being responsible for my inability to urinate. I am going to listen to you Rob as well as all you TMers. I lucky to have you and even luckier to have the kind of wife to get me through all this once again. Thanks for always listening, Yours, Jeron From: jan...@centurytel.net To: rp...@neillsupply.com; rumc...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Hospital Date: Wed, 24 Mar 2010 22:00:08 -0500 Jeron, Listen to Rob, he is right that there is absolutely NO blame that can be put on ourselves for TM or recurrences of it.Just do as the doc's say and remember that you got better the first time and you will improve again the second time. Just remember you have all of us here wanting you to get better, which you will with time and, assuming, therapy. Remember, we have all had our times of being really scared and wondering what the future will bring, but you need to ask your family for strong support and help to get you through this. With your strength and faith, your TM family will help you get through this as well as your biological family. Please keep us informed of your progress on good days and your mindset on bad days
RE: [TMIC] Hospital
Dear Friends, Last night I had a couple of bad episodes. Pain spasms running from my skull to my inflammed spine down to my right leg. The neuro-electric shocks lasted a few minutes each time, sometimes 10 minutes. I was treated with several drugs intraveniously, but valium finally did the trick in a large dosage. I have this onset of the TM recurrence and for the life of me, I can't figure out why? Maybe I tried to rush back to work too early last time, or maybe I just pretended to be normal when I clearly wasn't. Maybe I should have not lied when I kept telling people I'm fine. Now, I had my doctors up all night doing research, all 10 of them, this is some of the material they gave me: 1. http://fairfield.freehosting.net/97sept/tm-research.html 2. http://www.myelitis.org/abouttma.htm (these are you, my friends!they laughed because I always told my doctors about you guys) 3. http://www.behind-the-tm-facade.org/transcendental_meditation-tmresearch-problems.htm So, if you're up to having a read, please cut and paste each in a browser. I literally just did an ECG and I am hooked up to a automated dripper machine, Fentanil, Ringers and another drip that is unfortunately in code so I can't tell what it is. I also have an automated blood pressure kit attached to my right arm that comes on every 50 minutes. I'm on a 5 point (chest) Dixtal Monitor Portal for heart complications (last time my heart stopped for a minute and 47 seconds) as well. A catherter has also been inserted now for 4 days, so I can't wait to start educating it (clamp and release every 3 hours). No bowel movement for 5 days, which in itself is nonsense because as I remember 3 days was pushing the envelop of danger. So, I preparing now for an enema. I'm back on high dose cortisone for 7 days, weaning off slowly after that, so let's see if it works this time. The big worry is my right leg as i have a motion/force scale of 2, with inability to stand and lean on it when sitting, which causes pain scale 10 on my herniated discs. One of these discs being responsible for my inability to urinate. I am going to listen to you Rob as well as all you TMers. I lucky to have you and even luckier to have the kind of wife to get me through all this once again. Thanks for always listening, Yours, Jeron From: jan...@centurytel.net To: rp...@neillsupply.com; rumc...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Hospital Date: Wed, 24 Mar 2010 22:00:08 -0500 Jeron, Listen to Rob, he is right that there is absolutely NO blame that can be put on ourselves for TM or recurrences of it.Just do as the doc's say and remember that you got better the first time and you will improve again the second time. Just remember you have all of us here wanting you to get better, which you will with time and, assuming, therapy. Remember, we have all had our times of being really scared and wondering what the future will bring, but you need to ask your family for strong support and help to get you through this. With your strength and faith, your TM family will help you get through this as well as your biological family. Please keep us informed of your progress on good days and your mindset on bad days.Hopefully we can help. Janice From: Robert Pall Sent: Wednesday, March 24, 2010 2:43 PM To: j ra ; Transverse Myelytis Subject: RE: [TMIC] Hospital Jeron: I know you are terrified and I don't blame youbut please remember you are not alone. When did you have your first onset? What tests did the Dr. give you in determining his diagnosis? How old are you? And finally how are they presently treating you (are they giving you steroids?). Keep your head upthings will get better! All the best! Rob in New Jersey From: j ra [mailto:rumc...@hotmail.com] Sent: Wednesday, March 24, 2010 3:10 PM To: Transverse Myelytis Subject: RE: [TMIC] Hospital Good day my friends, Got some bad news today. I returned to the hospital a couple of days ago because I was feeling some pain and with TM, precaution is imperative. My neurologist just confirmed recurrent TM. I was doing so good, I was doing everything right, why me? I hate this, I have to start all over again. I am scared. I don't know what to do. My wife is terrified and my family is traumatised and it is all my fault.. help me please... Jeron Date: Tue, 23 Mar 2010 11:32:11 -0700 From: toddtm2...@sbcglobal.net Subject: RE: [TMIC] Hospital To: rumc...@hotmail.com Hey Jeron, Sorry to hear that you're in the hospital. Herniated discs is got to be very painful on top of TM. The drop foot will get better with exercises and the pin needle will get better with drugs. lol Please keep us updated on your stay hospital. We are thinking of you, Todd in Corpus Christi, TX --- On Tue, 3/23/10, j ra
RE: [TMIC] Hospital
Good day my friends, Got some bad news today. I returned to the hospital a couple of days ago because I was feeling some pain and with TM, precaution is imperative. My neurologist just confirmed recurrent TM. I was doing so good, I was doing everything right, why me? I hate this, I have to start all over again. I am scared. I don't know what to do. My wife is terrified and my family is traumatised and it is all my fault.. help me please... Jeron Date: Tue, 23 Mar 2010 11:32:11 -0700 From: toddtm2...@sbcglobal.net Subject: RE: [TMIC] Hospital To: rumc...@hotmail.com Hey Jeron, Sorry to hear that you're in the hospital. Herniated discs is got to be very painful on top of TM. The drop foot will get better with exercises and the pin needle will get better with drugs. lol Please keep us updated on your stay hospital. We are thinking of you, Todd in Corpus Christi, TX --- On Tue, 3/23/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: RE: [TMIC] Children To: jan...@centurytel.net, pieterheat...@shaw.ca, Transverse Myelytis tmic-list@eskimo.com Date: Tuesday, March 23, 2010, 3:14 AM Hey all, Firstly, I'm in the hospital again for more treatments (severe back pain due to herniated discs and dragging right leg, pins and needles etc). I asked Prof. Ivan about the connection and he disagrees based on many things he started to explain that I may have been too drugged up to understand. So, I asked him for medical journals on said topic and he reckons he has got some. I will get back to you on this. Also, stem cell research is still probably the only help for TMers with chronic pain and disabilities directly attributed to TM and MS. my 2 cents at 4 am at Clinica Sao Vincente Gavea, Rio de Janeiro, Brasil Jeron From: jan...@centurytel.net To: pieterheat...@shaw.ca; tmic-list@eskimo.com Subject: Re: [TMIC] Children Date: Mon, 22 Mar 2010 22:30:22 -0500 Jeepers! You do have a lot of autoimmune illnesses in your family.Kind of scary. I really don't understand insurance companies. They would be really happy if they only had to insure very healthy people that have no accidents of any kind.What a crock. Janice From: Pieter and Heather Sent: Sunday, March 21, 2010 12:57 PM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] Children Janice, I'm not sure about TM being passed on. However, there are a lot of autoimmune illnesses in my immediate family. I'm eldest of 3 girls (I'm going on 65). My father had rheumtoild arthritis. My sister 3 yrs younger has MS (was diagnosed in 1991 but figures she had it much longer) My sister 7 yrs younger was diagnosed with Ulcerative Colitis at age 19 and had large bowel and rectum removed then. My daughter has none of the above. However, this past year she signed up for extra medical insurance coverage and was denied MS coverage should she get it in the future. She had to include on her application any illnesses in her immediate family, mother, father, sibling. She had to declare that I have TM. So that tells me that insurance companies anyway figure there could be a connection. Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Sunday, March 21, 2010 6:29 AM Subject: [TMIC] Children Good Morning. It is the first day of SPRING! I have a question for you smarter than me TM'ers. In the future, do we have any information on chances for our children ending up with TM also? Janice Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now. _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Children
Hey all, Firstly, I'm in the hospital again for more treatments (severe back pain due to herniated discs and dragging right leg, pins and needles etc). I asked Prof. Ivan about the connection and he disagrees based on many things he started to explain that I may have been too drugged up to understand. So, I asked him for medical journals on said topic and he reckons he has got some. I will get back to you on this. Also, stem cell research is still probably the only help for TMers with chronic pain and disabilities directly attributed to TM and MS. my 2 cents at 4 am at Clinica Sao Vincente Gavea, Rio de Janeiro, Brasil Jeron From: jan...@centurytel.net To: pieterheat...@shaw.ca; tmic-list@eskimo.com Subject: Re: [TMIC] Children Date: Mon, 22 Mar 2010 22:30:22 -0500 Jeepers! You do have a lot of autoimmune illnesses in your family.Kind of scary. I really don't understand insurance companies. They would be really happy if they only had to insure very healthy people that have no accidents of any kind.What a crock. Janice From: Pieter and Heather Sent: Sunday, March 21, 2010 12:57 PM To: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] Children Janice, I'm not sure about TM being passed on. However, there are a lot of autoimmune illnesses in my immediate family. I'm eldest of 3 girls (I'm going on 65). My father had rheumtoild arthritis. My sister 3 yrs younger has MS (was diagnosed in 1991 but figures she had it much longer) My sister 7 yrs younger was diagnosed with Ulcerative Colitis at age 19 and had large bowel and rectum removed then. My daughter has none of the above. However, this past year she signed up for extra medical insurance coverage and was denied MS coverage should she get it in the future. She had to include on her application any illnesses in her immediate family, mother, father, sibling. She had to declare that I have TM. So that tells me that insurance companies anyway figure there could be a connection. Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Sunday, March 21, 2010 6:29 AM Subject: [TMIC] Children Good Morning. It is the first day of SPRING! I have a question for you smarter than me TM'ers. In the future, do we have any information on chances for our children ending up with TM also? Janice _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] OT My Mom
Your TM family is here for you. Jeron Date: Sat, 20 Mar 2010 09:27:30 -0700 From: jmh1...@sbcglobal.net Subject: [TMIC] OT My Mom To: wolft...@optonline.net; tmic-list@eskimo.com Kevin, It looks like by bringing her home you allowed her to see that you were ok, to share time with you, and then you let her go in the quiet comfort of her own home. I'm sure this is tough! But I believe you did the right thing and as time passes you will be at peace with your loss. My thoughts continue to be with you. janh My Mom passed sometime during the night Friday night. I am struggling to absorb this. At least I had a few hours with her before she passed because she was brought home from the hospital during the day Friday. I told her I loved her many times. She was in such a weakened state she could barely nod, but she knew who I was and what I was saying. I thought..hoped I'd have a little more time with her, but at least she is not suffering anymore. Thank you all for your kindness during this difficult time. It is painful. Kevin _ Hotmail: Powerful Free email with security by Microsoft. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] OT Hospice
Hi Kevin, Please allow me to add my experience to this, maybe it would help. Around the same time I was diagnosed for TM, my dad fell ill with ALS or Motor Neuron Disease (in the US it's called Lou Gehrigs Disease). He was in and out of Private hospitals for more than a year and he, like your mom decided to stop eating. We took him home and got him a home-care helper and redesigned much of the house for him to make him more comfortable. At this point he is barely audible and is paralyzed from he neck down, but he eats now. It's been almost a year since he was home and he survives everyday. We are lucky to still have him around. So, hang in there, she'll get better. My trick with my dad was to get him to smile all the time, watch TV with him, talk about when I was a kid (rotten kid) etc. It would ending up helping you too. The bond between a son and a parent is beautifulenjoy every moment left my friend! Yours, Jeron Date: Wed, 17 Mar 2010 10:12:24 -0400 Subject: Re: [TMIC] OT Hospice From: barbara...@gmail.com To: wolft...@optonline.net CC: tmic-list@eskimo.com Hi Kevin, I am so sorry for what you are going through. I do think, as you and others mentioned, that it might revive your mom a bit to be home. My mom was in the hospital a number of times her last few years and got more depressed each time she had to go in, but she was fine once she got home. Since moving my mother-in-law nearer to us, I've been subscribed to a site called ElderCareABC Blog at http://eldercareabcblog.com/. This morning it listed a link to an article titled How To Choose a Hospice here: http://www.healthytheory.com/how-to-choose-a-hospice I thought I'd send it along in case it might have something useful for you in it. I am praying for you both. Barbara H. http://barbarah.wordpress.com On Tue, Mar 16, 2010 at 10:01 PM, Kevin Wolfthal wolft...@optonline.net wrote: Has anyone had hospice for a family member in the home? We want to try and bring my Mom home from the hospital with hospice and a 24 hour nurse. She is refusing to eat and we are hoping her being home will help comfort her. Kevin _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Re: Hope
Hi everyone, I have to ask a favour. This is a case that I'm personally getting involved with and I need some help. It's a pediatric case and I need some advice as to the best place for the child to receive care. Please read the article. FULL STORY Paralysed girl needs $1.9m for surgery Julien Neaves jnea...@trinidadexpress.com Monday, March 8th 2010 SERIOUS CONDITION: Christa Brumant at her home in Tunapuna last week. -Photo: ANISTO ALVES ON SEPTEMBER 19 last year then nine-year-old Christa Brumant awoke at about 6 a.m. with terrible abdominal pains and was taken to hospital. Five hours later Christa was paralysed from the waist down. ’She said ’mummy I can’t walk’,’ her mother, Ramona Eligon, recalled. Christa spent 47 days at Mt Hope Paediatric Hospital where doctors diagnosed her with a condition called transverse myelitis, a rare neurological disorder caused by inflammation of a segment of the spinal cord. Her family is attempting to raise $1.9 million for medical treatment and rehabilitative therapy at the Johns Hopkins Hospital and the Kennedy Krieger Institute in Maryland, USA for May 4. When the Express visited their Tunapuna home last week, Christa, now 10, was sitting in the wheelchair that she has been confined to since September. She was checking out a Barbie Girls website and later raised her hands in triumph that she was a ’VIP’ on the site. She was not in any visible pain during the interview. Eligon said her daughter has no feeling from the waist down but suffers from painful muscle spasms daily, at times so severe that she would stiffen and fall off the chair. Her other symptoms include daily headaches, back pain so severe that it keeps her awake for hours, nausea and acute bladder and bowel dysfunction. Eligon is extremely worried that her daughter is unable to defecate for days sometimes, which could lead to a build-up of toxins and further complicate her medical problems. She said if her daughter’s condition remains untreated paralysis could become permanent and in a few cases transverse myelitis has been fatal, travelling to the upper body and paralysing the heart, lungs and other vital organs. The family has been able to raise $35,000 so far and has applied for the Health Ministry medical grant of US$10,000 for children requiring medical treatment abroad. The Education Ministry has provided a personal aide to assist Christa as she attends classes at Tunapuna Girls’ RC, and her mother noted she is an ’A’ pupil. Eligon has had to take leave from her job as an administrative assistant to help care for her daughter and was thankful for the support of her husband, Evris. To help raise funds the family is hosting a cruise on March 26 aboard the Treasure Queen and ’An Evening of Elegance’ on May 1. For more information call 777-5080 or 395-5727. ’I really convinced that if everyone in the country opens their hearts and makes a small contribution not only my daughter can be helped but others needing assistance can be helped.’ As the Express left the home, Christa wheeled herself outside, smiled and queenly waved good-bye. From: jan...@centurytel.net To: j.d...@shaw.ca; tmic-list@eskimo.com Date: Thu, 11 Mar 2010 08:50:25 -0600 Subject: [TMIC] Re: Hope Love to hear that stuff!!! Janice From: Janet Dunn Sent: Thursday, March 11, 2010 12:36 AM To: 'Janice Nichols' ; 'tmic' Subject: Hope I did forget to mention something: my right leg/foot has been the afflicted one. The one that I struggle to make move. The one that causes the pain. I thought it would be forever. One day as I was listening to the radio, I had an “aha” moment. A wonderful catchy song was playing, and I looked down and saw that my foot was tapping in time to the music. I had not been able to do that for a long time. I could have cried. So – yes, never give up. The positive changes are sometimes such a part of our life that we fail to recognize them for what they are. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: March 10, 2010 7:28 PM To: Janet Dunn; 'tmic' Subject: Re: [TMIC] Lesions and Myelin Regeneration DITTO, Jan!!! Janice From: Janet Dunn Sent: Wednesday, March 10, 2010 12:06 PM To: 'tmic' Subject: RE: [TMIC] Lesions and Myelin Regeneration I think that the improvement happens. For everybody? Depends. I have found a few improvements in areas, and some worsening in other areas. I take it one day at a time, because as we all know, anything can
[TMIC] TM and Me
I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad _ Hotmail: Trusted email with Microsoft’s powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
