Re: [TMIC] Anniversary
*Oh Naomi, I just hate it that you've had such a tough time. :-( You're pretty darned amazing to cope as well as you do. Please know that you're thought of often.* ** *Hugs,* ** *Grace *
Re: [TMIC] 2010 - Here we go again!
Hi Roger, I used Imuran for over two years for NMO. It's an excellent immunosuppressant. What is your target dose? Mine was to be 200 mgs but unfortunately, whenever I would try to titer up to 200 mgs from 100 mgs, I developed projectile vomiting. Grace
Re: [TMIC]
Hello Dalton, I have many MS friends and among them are those who have experienced TM. Some prior to their MS diagnosis, and some after. I myself experience episodes of relapsing LETM (Longitudinally Extensive Transverse Myelitis) but as a result of having NMO. Gracie
Re: [TMIC] alive
All right. People who experience a life changing illness, do not all reach a point of acceptance at the same time. It is a process and there is no specific time limit or gauge that can determine when that time of acceptance will come. Asking for *understanding* does not mean that one is sitting on the pity pot. In defense of Jeron, I saw nothing in his initial post that indicated that he was looking for pity. On the contrary I saw a heartfelt post from someone who was looking for understanding from others who have been through the same experience. Just because you (Or I.) have come to a point of acceptance, does not give us the right to insinuate that someone else who is not at the same point in their journey, should be where we are---instead we should respond with mindful kindness. We don't all *get there* within the same time frame nor do we all take the same route. Your way is not better, nor is it lesser---it is all very individualized. The majority of people who responded to Jeron's post, did so with understanding and kindness. I would hope that we all continue to do so. Respectfully, Grace
Re: [TMIC] alive
Hi Jeron, I hear you. Before I was hit with NMO I was a distance walker. It was my absolute passion and I always did between 6-10 miles every day. It was my medicine, my high. I hiked, rode horses, worked with animals both domestic and wild. In one fell swoop it was all over. Very tough for me to deal with. Like you, I am now going though my journey of illness without my family, and that is by CHOICE. No one knows what it's like to be in my skin as no two people perceive quality of life in the same way. My children and ex husband of 35 years, know that I'm ill with NMO and that it's serious---but that is all that they know. I will admit to being very open with my best friend. Why her and not the family? Because she *gets* me. She doesn't pity me. (God bless her for that.) Whenever I am hospitalised I do not usually tell my family, and if my children happen to become aware, I do NOT allow them to see me. There is no way that I want them to ever see me flat on my back paralyzed with catheters hanging out of my neck. My two daughters (I also have a son, but he was in Denver at the time.) witnessed that scene five years ago whenever I first got hit and it traumatized them. So did the first year and a half whenever my older daughter had to move in with my youngest and I in order to care for me. I talk to them frequently on the phone and see my youngest often as she is still currently living in the area while her husband it deployed. That being said, I do not allow my illness to ever enter into their lives. Others may choose to do things differently, but that is their own personal choice. If I am ever depressed and/or feel the need to cry---and that's something that I rarely do---I do it privately. My reasons may be different from yours, but for now it seems that we have chosen the same path, and there is certainly nothing wrong with it. The best, Grace
Re: [TMIC] 21st anniversary!
Hi Jim, If you don't mind, I'm going to post this at the NMO site also. We have a lot of TMA members there and I'm sure that there are some who would definitely like to donate. Yer a peach! Gracie
Re: [TMIC] just wondering
Hi Jeff, I'm not sure, but I think that if the impulses to the pudendal nerve are intact, that it is possible. Grace
Re: [TMIC] Mike
Gunny, I'm so very sorry to hear this news. Prayers and good thoughts coming your way. Grace
RE: [TMIC] QUESTION ON LARNETON
Hello Sue, I've looked at the website and it appears to be just another snake oil cure. If there were a drug or herb that was guaranteed to treat myelitis and resolve symptoms, the medical community would have jumped on it. Respectfully, Grace
Re: [TMIC] TMIC Neurontin--does it exhaust you?
I used 2400 mgs for two years. In the beginning it zombified me and made me bloat a little, but with time those effects wore off. It helped me a lot. Grace
Re: [TMIC] OT My Mom
*Kevin, * *I have been thinking of you today and sending up prayers for your eventual healing. If you need to talk---pick up the phone and call me. You and I are old time buddies and I'm always here to lend an ear or a shoulder. You're not alone. Every single one of us are here for you, anytime that you need us. * *Much Love, * *Grace* * *
Re: [TMIC] Children
*I was also told that TM itself is not familial. The verdict is still ouit on NMO. (Which I have.)* ** *Gracie*
Re: [TMIC] OT My Mom
*Kevin, * *I am so sorry. There are no words that can ease such a loss. Please know that we are all thinking of you. * *Love, * *Grace* * *
Re: [TMIC] OT Hospice
*Hi Kevin, * ** *Hospice is a wonderful organization. I think that it would be well worth your while. * ** *Gracie *
Re: [TMIC] Re: Hope
*It is very possible that she is suffering from recurrent TM, which is rare, but does happen especially in the context of diseases like NMO, Sjogren's, SLE. We don't have quite enough of her history to make any assumptions. As for her spasms, they appear to be tonic Not your usual run of the mill spasms. I have them and they are totally debilitating, and for me require huge doses of an anticonvulsant. (Tegretol 1500 mgs per day.) Before treatment with Tegretol, I couldn't be left alone. My heart goes out to her and I hope that she gets the needed funds, and finds relief.* ** *Grace*
[TMIC] Re: I just can't help it, I have to share
OMGosh! Your little Grand Daughters are gorgeous! XO GracieP.S. Your son is very handsome, also. :-)
Re: [TMIC] Lesions and Myelin Regeneration
*After nearly four and a half years, I regained patchy spots of feeling on the bottom of the foot and calf of my right leg. The majority of my trunk and legs are still numb, but this is a definite improvement. I attribute it to my use of Rituxan (For NMO), as late improvements are not unknown with the use of the drug. * ** *Grace * --
Fwd: [TMIC] tmic hijacked
*Kev, * ** *Don't feel bad. Some idiot went and turned me into an unknowing spam-bot a while back. My alternate email was sending Viagara and sexual aids crap all over the place. I actually received an add for a bunch of gross stuff from MYSELF here at my GMail. That's how I found out. It was a mess. I was so humiliated. :-(* ** *Gracie* -- --
Re: [TMIC] Vitamin D advice sought
*Hi Akua, * *My last Vitamin D test result was only at 4, so I took one 50,000 pill per week (It's a prescription.) for three months until it was back within normal parameters. * ** *Gracie*
Re: [TMIC] TM and Pilates
*Avonex is interferon beta-1a, one of the CRAB drugs that is used for MS.*
[TMIC] Re: TM/Hi Barbara, I'm another one.
*Hi Barbara,* ** *I'm another one. My relapsing LETM (Longitudinal Extensive Transverse Myelitis) is caused by NMO, which is a neuroimmunological inflammatory disease. Although I have experienced LETM many times, my official diagnosis is NMO. For me, TM is a symptom of my underlying disease process. Our member Linda C., experiences relapsing TM as a result of her Sjogren's. Like me, she is on a a heavy hitter chemo. (Rituxan---chemotherapeutic agent, a monoclonal antibody typically reserved for Non Hodgkin's Lymphoma, and severe RA patients.)* ** *TM can be caused, or be present in several different disorders. NMO, Lupus, Sjogren's, ADEM, MS, and others. And of course, it can also be idiopathic.* ** *Gracie (NMO+ since 2005) *
Re: [TMIC] Lori and Barbara
*Hi Iris, and welcome to the Group!* ** *Grace*
Re: [TMIC] TM and Pilates
*Hi Janice, * *One has to remember that the term Transverse Myelitis, means exactly that. Transverse: Across or crosswise. Myelitis: inflammation of the spinal cord. Inflammation of the cord can be caused by several different disease processes, but it can also be idiopathic, meaning that there is no known cause. Just because there is an underlying disease process does not negate the fact that the patient has indeed suffered a Transverse Myelitis attack. There are TM patients here with NMO (Myself, with relapsing LETM), Sjogrens ( Linda C. with relapsing TM) MS, those who have experienced ADEM, and other processes. There are also many patients who have experienced *idiopathic* TM, meaning that there is no known cause. * *Gracie* * * * *
Re: [TMIC] Re: TM/Hi Barbara, I'm another one.
*Hi again Janice, * *I'm firmly of the opinion that a patient needs to be educated re: their own disease process, in order to take a proactive stance re: treatment protocol and disease management. The best thing that one can do for themselves is to start pulling up the research. I have alerts set on my mail program that regularly update me with the new abstracts and papers regarding NMO, that are published online. It's been a huge help. * *Grace* * *
Re: [TMIC] TM and Pilates
Hi Janice, No offense taken. Just wanted to make sure that Randy doesn't leave us. He's been a really good friend to all of us and has always been very positive and supportive. No harm. No foul. Grace
Re: [TMIC] OT Prayer Request
*Kevin, * *We'll all be keeping your Mother in our prayers and thoughts. * *Grace* * *
Re: [TMIC] February Birthdays
*HAPPY BIRTHDAY EVERYONE!!!*
Re: [TMIC] Doctor Appointment
*I too learned a meds lesson the hard way. A year or two ago, I became concerned due to my daily Tegretol dose. (1200 mgs per day for paroxysmal tonic spasms.) So..I decided to cut back my dose on my own without input from my neuro. Well, I made it to 800 mgs, or so I thought. While at a doc appointment (Not my neuro.) at a Pittsburgh hospital, they suddenly came back with a vengeance. * *Now, if you've never had them, you can't possibly imagine what they're like. In my case, one leg rises to nearly hip level and locks, with the knee bent and the calf and splayed out foot pointing to the right. (Think male dog peeing.) Right arms bends up under the chin with claw. Head pulls to right shoulder. Left leg goes stiff, left arm also stiff. For many NMO patients, including myself, they don't just come once a day, or a few times a day, but several times per hour round the clock. They can last for up to two full minutes and are excruciating. Well, to make a long story short, they hit me in the waiting room and the staff thought I was seizing and panicked. The next thing I knew, my rear end was slapped in a wheelchair and they were calling for emergency help. I ended up in bed for several days while I slowly took my dose back up. Now I'm on 1500 mgs per day, and there is NO WAY that I will ever pull a stunt like that again. * *Gracie* * *
[TMIC] Yooo...hooo....TMIC Members, where are you?
*Where is everyone? The last msg that I got was from Frank, looking for pie recipes.* ** *Anyone out there?*
[TMIC] Skin cells transformed into nerve in new study. Researchers bypassed the need for stem cells in mouse study.
WASHINGTON - Researchers have transformed ordinary mouse skin cells directly into neurons, bypassing the need for stem cells or even stemlike cells and greatly speeding up the field of regenerative medicine. The experiment could make it possible to someday take a sample of a patient's skin and turn the cells into a tailor-made transplant to treat brain diseases such as Parkinson's or Alzheimer's, or heal damaged spinal cords. CONTINUED AT: http://www.msnbc.msn.com/id/35102633/ns/health-more_health_news/
[TMIC] MS Pills Work, Carry Severe Side Effects
*ATLANTA -- *Tests of the first two oral drugs developed for treating multiple sclerosis show that both cut the frequency of relapses and may slow progression of the disease, but with side effects that could pose a tough decision for patients. Two experts not involved in the studies said the drugs appear effective but with potentially dangerous side effects. It's too soon to know if the pills will be approved by the government or widely adopted by physicians, they said. CONTINUED AT: http://www.wfsb.com/health/22285876/detail.html
Re: [TMIC] Gabapentin ??
I took 2400-3200 mgs per day for several years and did fine with it. After a while, my body adjusted and sleepiness wasn't a problem. Grace
Re: [TMIC] Medical Marijuana
Hello Janice, Medical marijuana is just that---marijuana that one smokes. Marinol on the other hand, is pill form, and Sativex is a mouth spray. Many MS patients smoke to help them deal with pain and spasticity, as do many in the NMO Community. Grace On Tue, Jan 12, 2010 at 10:26 PM, Janice Nichols jan...@centurytel.netwrote: If you got it from the medical profession, would it be in pill form? Have you ever tried it or know anyone who has?How does it help and for how long? Janice *From:* Robert Pall rp...@neillsupply.com *Sent:* Tuesday, January 12, 2010 6:45 AM *To:* TMIC tmic-list@eskimo.com *Subject:* [TMIC] Medical Marijuana New Jersey is on the verge of becoming the next state (probably this week) to legalize medical marijuana. Question…..have any of you tried it and if so has it provided you with relief? I know how I would answer but perhaps other members will shed a different light on the subject….as for me I am delighted! Now I just have to get my Dr. to prescribe it! Rob in New Jersey
Re: [TMIC] Medical Marijuana
Hello Lori, I don't need much either---just a few hits if it is of good quality. Grace On Tue, Jan 12, 2010 at 10:37 PM, Lori Biehler lbieh...@earthlink.netwrote: In a pill form it is called marinol. That is basically synthetic THC and I was prescribed it in ’99 and it didn’t really take the pain away. It did make me sleep and hungry. I smoked it instead and that took the pain away, helped the spasticity in my muscles, and left me feeling pretty good. I did not need to smoke a lot to get relief. *From:* Janice Nichols [mailto:jan...@centurytel.net] *Sent:* Tuesday, January 12, 2010 10:26 PM *To:* Robert Pall; TMIC *Subject:* Re: [TMIC] Medical Marijuana If you got it from the medical profession, would it be in pill form? Have you ever tried it or know anyone who has?How does it help and for how long? Janice *From:* Robert Pall rp...@neillsupply.com *Sent:* Tuesday, January 12, 2010 6:45 AM *To:* TMIC tmic-list@eskimo.com *Subject:* [TMIC] Medical Marijuana New Jersey is on the verge of becoming the next state (probably this week) to legalize medical marijuana. Question…..have any of you tried it and if so has it provided you with relief? I know how I would answer but perhaps other members will shed a different light on the subject….as for me I am delighted! Now I just have to get my Dr. to prescribe it! Rob in New Jersey
Re: [TMIC] OT Nursing Homes
*Kevin, * *I am aghast that they are still badgering you and your Mother about going into a nursing home. It makes me so angry. Kevin, you are lucid and in control of your faculties, and as long as you and your Mother are able to take care of your physical needs (Be it on your own, or with help.) they will have an extremely difficult time trying to force the two of you into a home. Please email me and let me know what's going on. It's been a long time since I've heard from you. * *Love, * *Grace* * *
Re: [TMIC] Sjogren's (Amended)
*Hi Linda, * ** *Sjogrens was one of the diseases considered whenever I was still in the diagnostic process, before they had received the results of my NMO IgG test. MS was not considered as a possibility at that time, the reason being that my paralysis and optic nerve involvement was bilateral, which is not typical for MS attacks. This also allowed them to quickly eliminate the possibility of stroke. Diseases considered included Sjogren's, Lupus, ADEM (Quickly eliminated because there was not yet any brain involvement.), Sarcoid, and Vasculitis. Once all of my clinical results were complete, including the NMO IgG, it was a done deal.* ** *As an aside, my neuro opth thinks that I have now developed Sjogrens in addition to NMO, though I had a negative SS-A, Ro, SS-B and La with no Rheumatic Factor. My eyes are so dry right now, that I have scratches on the cornea. Same deal going on with the mouth. I have to see her every six months for a complete workup due to NMO, so I'll no doubt find out more at that visit. * ** *Stay warm!* *Gracie * Grace, thanks for posting this Sjogrens site. I have to say, of all the info I have read, this is the ONLY place that has actually mentioned Transverse Myelitis - up to 1% with Sjogrens! My doctor explained it to me when I got TM, but I had no idea what he was talking about - still sitting there in a fog with a totally numb body. I kind of feel like the doctor explained it to me again today, except today I actually know what he was talking about! I don't know, maybe ignorance was bliss at that time... Regina, did you read the articles and were you a bit surprised? Linda - Original Message - *From:* Grace M. grace...@gmail.com *To:* regina...@sbcglobal.net *Cc:* tmic-list@eskimo.com *Sent:* Thursday, January 07, 2010 4:23 PM *Subject:* Fwd: [TMIC] Sjogren's (Amended) *Hi Regina, * ** *They've actually identified the autoimmune antibody that is a marker for Devic's NMO. Although one can have a concurrent diagnosis of NMO AND Sjogren's (Which is extremely rare.), I don't think that they are related with the exception that both are autoimmune diseases, at leat I have not yet read anything to that effect in the literature. * ** *No Regina, the optic damage that occurs in Devic's NMO is limited to the optic nerve and disk. It is much more destructive that the ON which is encountered in MS, and permanent blindness is a relatively common occurence. * ** *Did your doctor not explain to you that Sjogren's can affect parts of the body other than the eyes?* ** * Sjogren's Subtypes Primary Sjogren's Disease VS Sjogren's Syndrome Apr 24, 2006 http://www.suite101.com/daily.cfm/2006-04-24 Elaine Moorehttp://www.suite101.com/profile.cfm/daisyelaine This article describes the clinical and diagnostic differences between primary and secondary Sjogren's syndrome. Sjogren's disease is a chronic autoimmune disease that occurs as a localized syndrome primarily causing mouth and eye dryness (sicca syndrome) or as a systemic disease affecting multiple organs. Sjogren's is suspected of affecting about 2-3 million Americans, 90 percent of them women. Frequently, the condition remains unrecognized and untreated, and when treated, the average diagnosis is reported to take 3.5 years. Women in their fourth decade of life are most likely to be affected. The complaint most often listed at the time of diagnosis is mouth dryness. In Sjogren's syndrome, white blood cells known as lymphocytes invade the exocrine glands. The exocrine glands produce needed moisture for lubricating and bathing the body's organs. Continued at: http://autoimmunedisease.suite101.com/article.cfm/sjogrenssubtypes Grace *
[TMIC] Linda---More Resources/Research papers re: Sjogren's and TM.
*Hi Irish, * ** *I dug these out of my files for you. There's a lot of info re: Sjorgen's and TM. Hope they're helpful. If you want any more, let me know. I've got a ton of papers stashed away in this old computer. If you would like to research further, just search for Sjogren's and TM using boolean search. (And, not, or, but, near, or the + (and) and - (not) symbols. You'll pull up a lot more information that way.) * ** *XOXO* *Gracie* http://jnnp.bmj.com/content/77/6/780.extract http://www.myelitis.org/newsletters/journal-1-07.htm http://archneur.ama-assn.org/cgi/content/full/58/5/815 http://www.sjogrensworld.org/mandel.htm http://www.ingentaconnect.com/content/adis/dgs/2004/0064/0002/art1 http://emedicine.medscape.com/article/1066649-overview
Re: [TMIC] Linda's recurrent TM
*Hello Regina,* *Recurrent TM is not *always* indicative of MS. There are very rare cases (And Linda is one of them) of people experiencing relapsing TM. I myself experience relapsing LETM (Longitudinal Extensive Transverse Myelitis.) as a result of Devic's NMO. Linda also has Sjogren's, which on occasion can cause relapsing attacks of TM. Much more goes into the diagnosis of Multiple Sclerosis than simply the presence of spinal lesions.* ** *Laura, I have Devic's NMO. It involves the spinal cord, optic nerve, brainstem, and in a percentage of cases, the brain proper. Unfortunately, it can be and often is, fatal.* ** * Respectfully,* *Grace (Devic's NMO since 2005)* ** **
Re: [TMIC] Linda's recurrent TM
*Hi Frank,* ** *I love you dearly but I beg to differ. Although a second episode of TM *can* be indicative of MS, it is not always. Recurrent TM occurs in NMO, rare cases of Sjogren's, rare cases of Cogans, in conjunction with LUPUS (Which usually but not always indicates NMO) There are also cases of NMOIgG seropositive cases of relapsing TM, which are in the NMO spectrum. There are also rare cases of idiopathic relapsing TM which is nothing more than that.* ** *Current research bears this out and can be provided upon request. No harm, no foul.* ** *Respectfully,* *Grace *
Re: [TMIC] Linda's recurrent TM
*Hi Irish, * *Y**ou've already done methotrexate both oral and injections, haven't you? Has your doctor conisdered CellCept? (Mycophenolate Mofetil) We do have some members at Devic's Support that have used it while also using Rituxan. Are you on a full gram of Rituxan per infusion? How much Imuran are you currently using---I'm thinking 150-200 mgs? My neuro had me totally phase out the Imuran after Rituxan kicked in. Like you, on one occasion I experienced a really low white count, and on another, elevated liver enzymes. Both times I had to stop using it until everything was back in order. * *XOXO * *Gracie* * *
Re: [TMIC] Some really comfortable shoes.
*Found some more shoes that are really comfortable. Go to the *Shoes for Crews* website. My daughter has a pair of these shoes and I've actually tried them out and worn them a few times. They're designed for people who are on their feet a lot, and really *grab* the floor---no slipping and sliding. She bought them because she really liked their look and feel. The styles are limited, but they do have some really neat women's shoes. I'm going to be ordering two pairs---one a lace up and the other a loafer. They're worth checking out. * ** *Gracie *
Re: [TMIC] Sjogren's
*Hi Regina, * ** *They've actually identified the autoimmune antibody that is a marker for Devic's NMO. Although one can have a concurrent diagnosis of NMO AND Sjogren's (Which is extremely rare.), I don't think that they are related with the exception that both are autoimmune diseases, at leat I have not yet read anything to that effect in the literature.* ** *dDd you doctor not explain to you that Sjogren's can affect parts of the body other than the eyes?* ** * Sjogren's Subtypes Primary Sjogren's Disease VS Sjogren's Syndrome Apr 24, 2006 http://www.suite101.com/daily.cfm/2006-04-24 Elaine Moorehttp://www.suite101.com/profile.cfm/daisyelaine This article describes the clinical and diagnostic differences between primary and secondary Sjogren's syndrome. Sjogren's disease is a chronic autoimmune disease that occurs as a localized syndrome primarily causing mouth and eye dryness (sicca syndrome) or as a systemic disease affecting multiple organs. Sjogren's is suspected of affecting about 2-3 million Americans, 90 percent of them women. Frequently, the condition remains unrecognized and untreated, and when treated, the average diagnosis is reported to take 3.5 years. Women in their fourth decade of life are most likely to be affected. The complaint most often listed at the time of diagnosis is mouth dryness. In Sjogren's syndrome, white blood cells known as lymphocytes invade the exocrine glands. The exocrine glands produce needed moisture for lubricating and bathing the body's organs. Continued at: http://autoimmunedisease.suite101.com/article.cfm/sjogrenssubtypes Grace *
Fwd: [TMIC] Sjogren's (Amended)
*Hi Regina, * ** *They've actually identified the autoimmune antibody that is a marker for Devic's NMO. Although one can have a concurrent diagnosis of NMO AND Sjogren's (Which is extremely rare.), I don't think that they are related with the exception that both are autoimmune diseases, at leat I have not yet read anything to that effect in the literature. * ** *No Regina, the optic damage that occurs in Devic's NMO is limited to the optic nerve and disk. It is much more destructive that the ON which is encountered in MS, and permanent blindness is a relatively common occurence. * ** *Did your doctor not explain to you that Sjogren's can affect parts of the body other than the eyes?* ** * Sjogren's Subtypes Primary Sjogren's Disease VS Sjogren's Syndrome Apr 24, 2006 http://www.suite101.com/daily.cfm/2006-04-24 Elaine Moorehttp://www.suite101.com/profile.cfm/daisyelaine This article describes the clinical and diagnostic differences between primary and secondary Sjogren's syndrome. Sjogren's disease is a chronic autoimmune disease that occurs as a localized syndrome primarily causing mouth and eye dryness (sicca syndrome) or as a systemic disease affecting multiple organs. Sjogren's is suspected of affecting about 2-3 million Americans, 90 percent of them women. Frequently, the condition remains unrecognized and untreated, and when treated, the average diagnosis is reported to take 3.5 years. Women in their fourth decade of life are most likely to be affected. The complaint most often listed at the time of diagnosis is mouth dryness. In Sjogren's syndrome, white blood cells known as lymphocytes invade the exocrine glands. The exocrine glands produce needed moisture for lubricating and bathing the body's organs. Continued at: http://autoimmunedisease.suite101.com/article.cfm/sjogrenssubtypes Grace *
Re: [TMIC]
*Hi Janice, * ** *I'm still out here. Have just been hibernating---it's a combination of having eaten too much junk food over the Holidays, and also the cold snap we're having. How have you been doing?* ** *Gracie*
Re: [TMIC] asking for prayers
Consider it done, Barbara. Gracie
Re: [TMIC]
*Neve pain or neuropathic pain, refers to the type of pain that is being experienced, not a particular location. * ** *Neuropathic Pain *Neuropathic pain results from injury to nerves in either the central nervous system or the peripheral body. It can be described as burning, tingling, shooting, stabbing, or shocking. Injury to the brain, brain tumors, diabetic neuropathy, and herpes zoster are all examples of things that may cause this type of pain. Neuropathic pain can be more difficult to treat than nociceptive. * *
Re: [TMIC] Lynn Rose is in the hospital
*Oh Bill, I am so sorry to hear this, but am relieved that it was caught quickly and that they did a stent. Please tell her that I'm praying for a very speedy and uneventful recovery. Lynn holds a very special place in my heart, and always will. There is not a day that goes by that I do not think of her. She's an extraordinary woman.* ** *Grace*
Re: [TMIC] Age
*April of 2005. I was 52.* On Wed, Dec 16, 2009 at 1:11 PM, Jim Lubin jlu...@eskimo.com wrote: 21 - 20 yrs ago At 09:35 PM 12/10/2009, Janice Nichols wrote: Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond?I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Topamax/MRI length.
*My MRI's are very long also (Usually about 3-3 1/2 hours.) The length of time is determined by a lot of factors---how much of the cord is done, what the doctor is looking for, and radiologic parameters. I always have the brain, C cord, T cord, and L area done, with and without contrast.* *Re: Topomax. It's a good drug, but one has to remember to drink lots of water in order to stay hydrated. Our daughter was on Topomax for a very short while and ended up becoming toxic. She was very ill. So, if you are on a large dose, be careful with hydration.* *Grace*
[TMIC] More on Facebook Page
*I too love Facebook. Finding Krissy was great because for the first time, I've actually found someone else who likes my music. Dare I say that I'm a *Tool* fan? (Yeh, yeh, I know that I'm too old and should be listening to Lawrence Welk recordings instead.) Not to mention that Krissy and I share the same sense of humordry and droll. ;-) * ** *Love ya Krissy!!! * *Gracie* *---Original Message---* *From:* Krissy Z tmla...@yahoo.com *Date:* 10/19/2009 11:16:16 AM *To:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Facebook Page I know it defiantly took my time on here...but i love the people and the games, it's fun and social at the same time. And seeing some of my TM friends there and having fun with them is just great! Grace and I share music, Gilly Jim Dave etc and I love mafia wars :) Come on over! ~Krissy~ We are all in this together, by ourselves. - Lily Tomlin ~I'm In pretty Good Shape For the Shape I am in~ --- On *Fri, 6/26/09, Cindy McLeroy cindymcle...@socal.rr.com* wrote: From: Cindy McLeroy cindymcle...@socal.rr.com Subject: Re: [TMIC] Facebook Page To: bradebi brad...@gmail.com, Akua a...@artfarm.com, tmic-list@eskimo.com, Jim Lubin jlu...@eskimo.com Date: Friday, June 26, 2009, 10:01 PM Now when folks wonder why the list is slow, they should go to facebook and check out Farm Town. That must be where everyone disappears sometimes. - Original Message - *From:* bradebi http://mc/compose?to=brad...@gmail.com *To:* Akua http://mc/compose?to=a...@artfarm.com ; tmic-list@eskimo.comhttp://mc/compose?to=tmic-l...@eskimo.com; Jim Lubin http://mc/compose?to=jlu...@eskimo.com *Sent:* Friday, June 26, 2009 3:29 PM *Subject:* Re: [TMIC] Facebook Page I am too!!!...I love Farm Town!.I am taking a break... .I am into building my Zoo right now..it is addicting too!. Debi *---Original Message---* *From:* Jim Lubin http://mc/compose?to=jlu...@eskimo.com *Date:* 6/25/2009 7:37:10 PM *To:* Akua http://mc/compose?to=a...@artfarm.com; tmic-list@eskimo.comhttp://mc/compose?to=tmic-l...@eskimo.com *Subject:* Re: [TMIC] Facebook Page there are several TM-ADEM-NMO groups on Facebook, most are linked here http://www.myelitis.org/support.htm Jim (who has become addicted to the Farm Town game on Facebook) At 06:43 PM 6/24/2009, Akua wrote: I'm digging Facebook--- what about creating a fan page. -- Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] tysabri
On Fri, Oct 16, 2009 at 8:24 AM, Grace M. grace...@gmail.com wrote: *Hi Deb, * ** *Re: Tysabri. I go to a very large teaching and research facility for my Rituximab infusions, and have a lot of MS friends that are using Tysabri. Many have had really good results, including a reduction of relapses and improvement in their EDSS, and stable lesion loads. Most seem to be very happy with it.* ** *Gracie * On Fri, Oct 16, 2009 at 7:04 AM, Deb Monteleone aiki...@optonline.netwrote: Hi, I am thinking of going on tysabri, anyone out there on it. If so do you have side affects and do do feel better? I'm currently on copaxone for just over a year. Starting to forget my shots and spoke to some people who's symptoms got better on tysabri. Thanks for any input, Deb, Long Island ny
Re: [TMIC] tysabri
*Janice, I believe that Deb is talking about her MS symptoms. * ** *Gracie* On Fri, Oct 16, 2009 at 7:44 PM, Janice jan...@centurytel.net wrote: What symptoms are we talking about? Janice - Original Message - From: Deb Monteleone aiki...@optonline.net To: TMIC tmic-list@eskimo.com Sent: Friday, October 16, 2009 6:04 AM Subject: [TMIC] tysabri Hi, I am thinking of going on tysabri, anyone out there on it. If so do you have side affects and do do feel better? I'm currently on copaxone for just over a year. Starting to forget my shots and spoke to some people who's symptoms got better on tysabri. Thanks for any input, Deb, Long Island ny
Re: [TMIC] OT- I sing- Gary in MI
*Mindy, * ** * You have a beautiful voice! * ** *Hugs, * ** *Grace* .
Re: [TMIC] Comfortable Shoes Anyone?
*Hi Linda,* ** *I wear garden shoes year round, rain, snow, sleet or hail. Mine are called Sloggers and are relatively inexpensive, and come in a lot of different colors. I've stocked up on them to make sure I've always got a pair. They are like walking on Memory Foam, and don't aggravate that damnable burning. They have a strap around the back that is actually permanently attached, so they're easy to keep on. Before my friend discovered them for me, I had a real problem with stepping out of my shoes, as I have no grip in my toes. I'm strictly a blue jeans person, and they actually look nice with them. A lot of my nurse buddies have picked up a pair or two to wear to work, and really like them.* ** *Gracie *
Re: [TMIC] Comfortable Shoes Anyone?
: *Hiya Irish, * *The dishwasher, LOL! I either throw mine in the washer on gentle, or wear them into the shower and scrub them while I'm in there. I've got several pairs of each color. :-) * *XOXO * *Gracie*
Re: [TMIC] Who else knew this about Gunny..? (Richard Boyle)
*Hiya Kevin, * *Yes, Gunny's a great guy and, as you can see, a BUSY guy, but he always takes his time out to help, if it's needed. He's been instrumental over the years in helping several of our NMO members to get into Hopkins quickly, and it's most appreciated. I'm looking forward to his next support meeting because I'm gonna try to get myself out there. * *GO GUNNY! * *Hugs, Gracie* **
Re: [TMIC] TM and Lupus question
*Hi Jill, * ** *I have a friend with Systemic Lupus. She does chemo--Rituxan (Rituximab) which I also do, though for NMO. Yes, she has had multiple TM attacks, but her case is severe. Not all cases progress like hers has.* ** *Gracie*
Re: [TMIC] Support groups
*Grace Mitchell SW PA Devic's Support * On Wed, Sep 16, 2009 at 12:54 PM, Cindy McLeroy cindymcle...@socal.rr.comwrote: Cindy McLeroy Support group leader for Southern CA Reply direcly to me if you are interested in joining our group. We've been going strong for almost 7 years.
Re: [TMIC] Unidentified subject!
*I've taken it for years and no it doesn't make a difference. MS is a totally different disease process than idiopathic TM, though MS patients can certainly present with TM. * ** *Grace* On Sat, Sep 12, 2009 at 7:53 AM, Jill Z jillybean60...@yahoo.com wrote: I wonder if this could work for TM? Does anyone take this blood pressure medicine and notice any difference? Maybe with some blue gatorade and blue MM's it would work better...hehe http://www.webmd.com/multiple-sclerosis/news/20090817/blood-pressure-drug-may-help-treat-ms?ecd=wnl_mls_091109
Re: [TMIC] I met a TMer!!!!!
*Hi Gilly. * ** *Isn't it a great feeling to meet someone else who has TM face to face? I got to meet two of my NMO friends in the flesh, and it was wonderful. Someone else actually *gets it*, you know? * ** *Many hugs, and see ya at Facebook, * *Gracie* G'day All, It's been such a long time since I've written to the list but I assure you, I've been reading and keeping up with you all. I was devastated to hear we have lost another member of our family. R.I.P. Rick. I've bought myself out of posting retirement today because something so special has happened! I have just said goodbye to my visitors. They are Allen and Andrea Southern. Andrea is a member of our list, a lurking member but a member none the less. After 8 years of tm I've never met another person in the flesh who has it. We had a lovely visit and I can't begin to describe how wonderful it was to have a real life conversation with another tmer. OK, I won't ramble anymore but I did so want to share with you all. hugs Gilly, the old girl from Australia.
Re: [TMIC] Death
*Hi Janice, * ** *I think that we have to remember that just because one has TM doesn't mean that one is immune from all of the other diseases and disorders that are out there. Hypertension, diabetes, cancers, sudden illness, accidents, etc. Then too, we age, and with aging often come other health concerns.* ** *Gracie* On Fri, Sep 11, 2009 at 1:01 PM, Janice jan...@centurytel.net wrote: TM'ers, I have only been on this website about a year, but lately it seems that we are losing several members.Maybe Frank can weigh in on this one.Are these people dying because of TM, or is it that they have had it for so many years and they are elderly? Or is it because TM brings on other complications? What do you all know about this? I am really getting concerned. Janice
[TMIC] Fwd: My beloved husband Jim
*I am so sorry for your family's loss. * ** *Grace* On Thu, Sep 10, 2009 at 12:06 AM, cjb...@aol.com wrote: Jim left his earthly pains and frustrations behind yesterday evening about an hour after being transferred to a hospice house in Davison Michigan. Our children and grandchildren and Alice and Ron,and Mary were all able to spend time with him before his death. I will forever be grateful for the 45 years Jim and I had together and for the wonderful children Jodi husband Dave,their daughter Samantha, husband Steven and baby Samuel. Eric and wife Cindy and their beautiful girls,Mackenzie,Sierra,Kaleigh,and Taylor. A memorial will be held on Saturday Sept.12th at 11:00am at First Congregational Church corner of Fifth and Bancroft, luncheon following. In lieu of flowers, a donation to the Transverse Myelitis Assoc. for research to help fight the disease that Jim fought so valiantly to conquer. In the end it was a stroke that took his life. -- --
Re: [TMIC] BM'ers Club
*I think that our treasurer should set our club dues at the rate of at least four BM's a month. Nothing less. Let's run it past our President, Doc Frank.* ** *Gracie*
Re: [TMIC] Fingernail growth ?
*Hi Frank, * *I have significant differences in nail texture, growth and thickness. I believe that in my case, it's attributable to all of the meds that I take including chemo. Hopefully, someone else will have some input for you. * *Grace*
Re: [TMIC] My wonderful husband Jim
*Prayers and good thoughts are coming Carol. Stand strong. * ** *Grace*
Re: [TMIC] BM'ers Club
*ROFL! Janet, you're a hoot!* *From:* Patricia Cooley [mailto:patticoo...@wi.rr.com] *Sent:* September 8, 2009 6:53 AM *To:* 'Janice'; fr...@franksheldon.com *Cc:* tmic-l...@eskimo.net *Subject:* RE: [TMIC] BM'ers Club JANICE AS A MEMBER OF THE BM’ers WELCOME ABOARD. ONE OF OUR BY-LAWS IS THAT THERE IS NO QUESTION TOO EMBARRASSING, ETC. WE CAN ALL FEEL TO ASK WHATEVER CONCERNS US. YOUR RIGHT, NO NE IS PERFECT, LESS OF ALL ME. HAVE A GOOD DAY AND TIAD PATTI - WISCONSIN *From:* Janice [mailto:jan...@centurytel.net] *Sent:* Monday, September 07, 2009 9:52 PM *To:* fr...@franksheldon.com *Cc:* tmic-l...@eskimo.net *Subject:* [TMIC] BM'ers Club I would like to belong to the BM'ers club also. I will try very hard not to ask too many questions and will try to keep them fairly intelligent. Of course, no one is perfect! Janice
Re: [TMIC] Need info---does anyone have a port?
*Hi Janice, * *I**t will be placed in my chest, and will be totally under the skin, so I'll be able to bath, swim, and the whole nine yards. I've managed to find a good number of people who have one, and all of them seem to like it. Thanks so much for the input. * *Hugs,* *Gracie* * *
Re: [TMIC] New Medications
*Hi Robert, * ** *I took 60 mgs of Cymbalta per day for about two years. It didn't really help with the banding, pain, or sensory symptoms, but it was great for depression. I didn't have any side effects.* ** *Gracie*
[TMIC] Need info---does anyone have a port?
*Hi Guys, * ** *My infusion nurse discussed the possibility of having a port inserted for my Rituximab infusions. Does anyone here have one, and if so, what has your experience been? My veins are a really hard stick and blow easily. I've read about using a port, and it sounds quite innocuous but I'd like some first hand input. * ** *Thanks, * *Gracie*
Re: [TMIC] Digital Removal
*I'm joining too, Pattie. Do you think that Frank would agree to be our President?* ** *Gracie.A BM'er since 2005!*
Re: [TMIC] Digital Removal
*Guys, I was just so happy to see that others have to use the digi-stim method. It gets real lonely out here. We gotta start a club! ;-)* -Original Message- From: Janice jan...@centurytel.net To: tmic-l...@eskimo.net Sent: Tue, Sep 1, 2009 2:04 am Subject: [TMIC] Digital Removal For all of you that responded and those of you that just read and laughed, I feel like a real dummy! But, having said that, it is a rule with this group that ANY questions are answered to the best of our ability.Admittedly, most are more intelligent.Hopefully, will do better in the future. Thanks for all those who answered delicately! Janice
Re: [TMIC] In memoriam
*I'll be sure to remember her and send up some prayers for the family. September 9 is also my son's birthday, so I know that I won't forget.* On Mon, Aug 31, 2009 at 11:52 PM, Barbara H. barbara...@gmail.com wrote: As I was preparing the birthday list for this month, I saw that Sept. 9 was Pam Montz.s birthday. For those who are new, Pam was a long-time faithful TMIC member who just passed away a few months ago. I'm sure her husband, Dave, would appreciate a note of remembrance. I think he still has Pam's e-mail address open at montzma...@aol.com. Barbara H. http://barbarah.wordpress.com
Re: [TMIC] Digital Removal
*Oh Barbara, I'm lauging so hard here that I'm in danger of having a pee accident. Secret Handshake?!?!? What a picture!* On Tue, Sep 1, 2009 at 11:22 AM, Barbara H. barbara...@gmail.com wrote: Just so long as there is not a secret handshake. :-D Barbara H. http://barbarah.wordpress.com On Tue, Sep 1, 2009 at 11:19 AM, Grace M. grace...@gmail.com wrote: *Guys, I was just so happy to see that others have to use the digi-stim method. It gets real lonely out here. We gotta start a club! ;-)* -Original Message- From: Janice jan...@centurytel.net To: tmic-l...@eskimo.net Sent: Tue, Sep 1, 2009 2:04 am Subject: [TMIC] Digital Removal For all of you that responded and those of you that just read and laughed, I feel like a real dummy! But, having said that, it is a rule with this group that ANY questions are answered to the best of our ability.Admittedly, most are more intelligent.Hopefully, will do better in the future. Thanks for all those who answered delicately! Janice
Re: [TMIC] Digital Removal
*Hi Lynne, * *Stewed prunes sometimes work for me also. Whenever I am hospitalised, I usually have them twice a day. Since I'm now mobile and out and about though, I don't use them quite as often as I tend to have accidents. If I can be sure that I will not have to go out, and that no one will be stopping over, then I use them. It doesn't eliminate the need for digi-stim totally, but makes the process much easier. * *Gracie* --
Re: [TMIC] Swine flu vaccine
*Hi Regina, * ** *I won't be getting it as I attempt to avoid anything that is invasive, even a simple shot. I've been kept in an immuno-compromised state for the last four and a half years. Luckily, I've only been really ill twice, both times with pneumonia that responded well to oral antibiotics. Knock wood that I'll continue to have good luck. * ** *Gracie*
Re: [TMIC]
*Actually Ella, clipping relaxes the tendon. I previously took care of a cerebral palsy patient who had developed horrible contractures of her legs and arms. Eventually they did clip her leg tendons, which helped to prevent the contractures from becoming even worse. * ** *Respectfully, * *Grace* --
[TMIC] Tenotomy (Tendon clipping Link.)
Definition Tenotomy is the cutting of a tendon http://www.answers.com/topic/tendon. This and related procedures are also called tendon release, tendon lengthening, and heel-cord release (for tenotomy of the Achilles tendonhttp://www.answers.com/topic/achilles-tendon ). Purpose Tenotomy is performed in order to lengthenhttp://www.answers.com/topic/lengthena muscle that has developed improperly, or become shortened and is resistant to stretch. Club foot is a common developmental deformityhttp://www.answers.com/topic/deformityin which the foot is turned inward http://www.answers.com/topic/inward, with shortening of one or more of the muscles controlling the foot and possibly some bone deformity as well. Continued at: http://www.answers.com/topic/tenotomy
Re: [TMIC] able to move slightly
*Jim, this is absolutely awesome! What did your Mom say?* ** *Love,* *Gracie * On Mon, Aug 24, 2009 at 11:48 PM, Akua a...@artfarm.com wrote: ALLPRAISES! This give me hope, Jim Thank you for sharing! Akua The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching, I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org --
Re: [TMIC] An unpleasant subject.
I'm so sorry to hear this news. You're in my thoughts and prayers. Gracie
[TMIC] Re: Quadpost/Nitpicking.
Jude, TM is the result of spinal cord insult , and being a quad can be the result of TM. Our own Jim Lubin is a quad. There are other quads here at this site whom I count among my friends. I am aghast at your statements and extremely offended. I myself do not have TM either, but rather NMO, which results in extensive spinal cord involvement, but I have used this list since onset. So, are you suggesting that I too, should shuffle off to Buffalo? It ain't gonna happen. A compromised spinal cord is a compromised spinal cord---it doesn't matter how you get it, and a TM diagnosis does not make one special. This nitpicking has got to stop. An extremely offended, Grace
Re: [TMIC] About Lynne--Our ROSEOFRENO.
*Dearest Lynn, * *Thank you so much for your most kind words. You know, several months before you helped me, I had totally given up the advocacy effort, leaving it all in the hands of our founder, Tim Mulvihill. (Deceased since March of 2008, and now the angel on my shoulder.) I was so ill back then, both in body and soul, and the often sad stories of other patients and the deaths that the group had experienced, were just too much for me. Tim and I both, spent many hours crying over the telephone to each other. He was an extremely loving and kind man, and the plight of patients affected him deeply.* *The day that I received that envelope and card from you, I cried like a baby. Can you ever imagine how wonderful it was to know that someone who didn't know me from Adam, actually cared? It opened my eyes and helped me to realize that the singular most important thing I could ever do, would be to let others suffering from this *thing* know that that there was someone out there, who cared what happened to them. * *It's still bittersweet for me, and every now and again, I start to feel overwhelmed and need to withdraw just a bit. I know in my heart that I'll never give it up, and will continue to do the best that I can to reach out to patients, and to spread NMO awareness. (The good and great Lord has blessed me with a very big mouth. ;-) * *Much love, * *Gracie*
[TMIC] Frank--Re: Brown Sequard.
*Hi Frank, * ** *Your presentation was also Brown Sequard, wasn't it? Or am I mistaken? * ** *By the way, how is that hand and wrist?* ** *Gracie*
Re: [TMIC] TM
*Hi Janice, * *There are no fast and hard set rules about how much of the body is affected by any lesion. In my case (NMO) my lesion encompassed almost the whole of my Thoracic cord. I presented with Brown Sequard paralysis (Often referred to as Hemicord.) and I have been hit not just once, but three seperate times now with substantial paralysis and long hospitalisations each time. Yet, today I walk. Why do I walk, yet someone else with a similar lesion size and presentation cannot---no one really knows. It's a crap shoot. * *Gracie *
[TMIC] Re: Alton--NMO
*Hello Alton, NMO is an autoimmune CNS disease that causes relapsing LETM (Longitudinal Extensive Transverse Myelitis) in 90% of patients, relapsing ON (Optic Neuritis), and in 62% of patients, eventually brain lesions. It's a very serious disease and the prognosis is poor. Within five years, 50% of patients will be permanently blind in at least one eye (Often bilaterally.) and permanently parlayzed in at least one limb. (Often more.) There is a 33% mortality rate in the first five years, with death being caused by respiratory failure which is the result of a compromised brain stem. At ten years, the rate of serious disabilty is 50%. I failed on first line treatments and currently use Rituximab, a monoclonal antibody which is a chemo agent. It's no fun. :-( Grace *
Re: [TMIC] TM
Mindy, Technically, Frank is correct. Many neuros do not like to use the term TM but refer to it as simply myelitis instead. Yes, you are correct that an attack can be acute, or sub-acute. I suffered from acute myelitis, however my lesion was not Transverse (It was Brown Sequard) and thus there was hope that I would walk again. Had it been transverse, I would not have regained function. Respectfully, Grace
Fwd: [TMIC] TM
Hi Janice, In my case, the lesion was more pronounced on one side than on the other, which left me paralyzed and without feeling on one side, and paralyzed with minimal sensitivity on the other. To this day, one side is much weaker than the other. The lesion began at T2, and as is often common with NMO, encompassed almost the entirety of the thoracic cord. Brown Sequard presentation is uncommon, and is usually the result of trauma. There are several members here who initially presented this way. Grace
Re: [TMIC] TM
*Hello Janice,* ** *Yes, a small lesion can affect a relatively small part of the body. Myelitis simply means inflammation of the spinal cord. Transverse, means *across*.* ** *Grace*
Re: [TMIC] Constant Fatigue
*Hi Regina, * ** *I use Amantadine for severe fatigue. It's an anti viral that is also used for Parkinsons patients and neurological fatigue. It works like a charm and is so much cheaper than Provigil. * ** *Gracie*
Re: [TMIC] New onset of TM - little girl
*It depends on the underlying cause of her TM. If it is something like NMO (As in my case.) then immunosuppression via chemo would be something that a neuro would definitely consider. If it is idiopathic---then, no.* ** *Respectfully, * *Grace* *(NMO since 2005)*
Re: [TMIC] arts page
*Your paintings are beautiful Wim!* ** *Gracie*
Re: [TMIC] July Birthdays
*Happy Birthday Everyone!!!* ** *Gracie*
[TMIC] Sheesh! Stop it Guys!
*Todd did not intentionally do anything wrong. He wrote an extremely supportive post to Naomi. He in no way disparaged this list, or anyone on it. I've known Todd since I first became ill and he has never been ANYTHING but good to me, and I have never seen him post anything negative to anyone on this list site. I also know that he would help anyone here that he could, if he had the means to do so. Sadly, not all of us have the means to do so, myself included. For the life of me I do not understand what has been going on here lately.* ** *Grace*
Re: [TMIC] Facebook Page
*Jim, * ** *You have me laughing so hard now. :-) I'm the same way, though with me it's Mahjongg and the strategy games. If your Mom ends up being too late with dinner, just call me and I'll send over a Pizza.* ** *You're a peach!* *Gracie* On Sat, Jun 27, 2009 at 7:40 PM, Jim Lubin jlu...@eskimo.com wrote: It could be... I've been on Facebook for j years and haven't used it as much as I have the last 2 weeks since starting Farm Town. Good thing I finished putting the latest TMA newsletter online before I got into Farm Town, I would have really had some time management problems. I got my mom on it too, which might have been a mistake. When harvest time happens around our diner time, guess which has been coming first? Yup, we have been eating later every night. :-) At 07:01 PM 6/26/2009, Cindy McLeroy wrote:  Now when folks wonder why the list is slow, they should go to facebook and check out Farm Town. That must be where everyone disappears sometimes. - Original Message - From: bradebi brad...@gmail.com To: Akua a...@artfarm.com ; tmic-list@eskimo.com ; Jim Lubinjlu...@eskimo.com Sent: Friday, June 26, 2009 3:29 PM Subject: Re: [TMIC] Facebook Page I am too!!!...I love Farm Town!.I am taking a break... .I am into building my Zoo right now..it is addicting too!. Debi  ---Original Message--- From: Jim Lubin jlu...@eskimo.com Date: 6/25/2009 7:37:10 PM To: Akua a...@artfarm.com; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook Page there are several TM-ADEM-NMO groups on Facebook, most are linked here http://www.myelitis.org/support.htm Jim (who has become addicted to the Farm Town game on Facebook) At 06:43 PM 6/24/2009, Akua wrote: I'm digging Facebook--- what about creating a fan page. -- Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Facebook Page
*Hi Jim, * *I'm afraid to even start Farm Town---I KNOW I'll get addicted...as it is, I already need to start attending Mahjong Addicts Anonymous meetings ;-) Gracie*
[TMIC] Re: (TMIC) Sex.
*I can't believe that I am going to reply to this, as it's an issue that I just try hard to avoid, but. okay, so here goes. During my first NMO hit, I lost all feeling *there*. At first I was hopeful that it would slowly come back, but my second bad hit sealed the deal. I can remember lying in my hospital bed trying to get up the nerve to speak with my doc about it. Finally one day I mentioned it in passing, but didn't really press the matter---I was too embarrassed. Later that night, one of my neuro nurses came in to sit and talk with me about the disease, as I was her first NMO patient. We talked a lot about nerves and nerve damage, and as I was very savvy re: the implications of having relapsing NMO, we spoke freely. (She's amazing, and I've since had her as my nurse in the neuro ward, many times.) Finally, I just took a big swallow and blurted it out. She told me the truth, that in my case it was unlikely that feeling would return, but that one should still keep hoping that one day there would be some increase in sensation. She was correct---I have been numb from my sensory level downwards since 2005. Most of my body still feels as if it has been shot up with Novocaine. * ** *Anyways, I was shell shocked and actually mourned the loss. To lose something that is so integral to one's life, is a violation of sorts. It was bad enough that I had no control over my other bodily functions, but the loss of physical sexuality was adding insult to injury. I felt as if I had lost my *person-hood*, and had suddenly become androgynous. I still fight those feelings, and yes, sometimes I still cry about it. Sexual contact offers an intimacy like no other. Some of us are more sexual than others, and the loss can often be the cruelest cut of all. * ** *These days I try hard not to ever even think about it. Whenever I do, I become extremely angry at what I perceive to be the unfairness of it all, and I lose sight of what I do still have. I should be very grateful for every day that I draw a breath---unfortunately, sometimes the negative feelings get the better of me. For me, it's been a tough loss to deal with. * ** *Okay, signing off before I totally embarrass myself.* ** *Grace *
Fwd: [TMIC] Listen
*Gunny, * ** *I always knew that you were a wild-man. ;-) * ** *Hugs, * *Grace* Great idea, Trudy! I would also like one! I have one of Barbara Mandrell, Elvis (I'm sure is from his fan club and a copy), the middle boy from Father Knows Best, and Andy Griffith. Does that show my age or what??? That's okay because I love it, age and all!!! Jeanne *---Original Message---* *From:* Trudy Ogilvie mother...@gmail.com *Date:* 6/22/2009 8:37:06 AM *To:* bgunny7...@aol.com *Cc:* Tmic-list@eskimo.com *Subject:* Re: [TMIC] Listen Gunny!! Not only are you a U.S. Marine (one of the few good men) .. you were the original drummer for the Edsels.. Do you still do autographs??? with picturesthat really is awesome! Semper Fi Trudy On Sat, Jun 20, 2009 at 6:23 PM, bgunny7...@aol.com wrote: Just sittin here reminiscin. I know some of you do and some of you don't, but this is the first song I was ever on. Yeah, I was thr original drummer way back in 1959. There's only two originals here on this tape. Marshall Sewel on the lft, and Harry Green the guy with the galsses and the white hair, next to Marshall. This is the PBS broadcast.YouTube - The Edsels - Rama Lama Ding Dong http://www.youtube.com/watch?v=W54ehlomu48 -- Download the AOL Classifieds Toolbarhttp://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004for local deals at your fingertips. 01_side.gif
Re: [TMIC] Transverse Myelitis Network
*Hi Naomi, * *Very well said. It's like that for NMO patients also. Although we too, suffer from non traumatic SCI, our needs are very different than the typical TM patient. Our treatments differ greatly---many of us are on heavy duty anti-rejection/immunosuppressant drugs, and many (Myself included.) are on chemotherapy agents. We too have members who are quads, and more than a few are vented. Many of them frequent other communities and we always encourage that. If a patient can find support and validation from other patients in the same boat at a different site, we encourage them. Oftentimes, the information that they bring back to us is priceless. * *Be well, * *Grace* * *
Re: [TMIC] Transverse Myelitis Network
*The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. * *Respectfully, * *Grace*
Re: [TMIC] read receipts?
*It's just a feature of mail programs that notifies the sender that their mail has been received and opened. I only use it for business correspondence. * *Grace* * *
Re: [TMIC] Update on Jim
*Still praying for Jim, Carol. Keep us posted.* ** *Hugs,* *Grace*
