Re: [TMIC] OT- I sing
Thanks' for all the praise and encouragement! I've struggled with performance singing since I was a little girl ( my voice was striking even back then) I wanted people to like me and the quality of my voice was not well appreciated by my peers in the late 70's and early 80's, Tough their parents adored me! I was so confused I even stopped singing for years. I've finally come to the right place mentally and spiritually. singing should be done for the sheer joy of having been given the gift of voice. I was stunned to hear that someone in our church complained that we sometimes worship music more than God in our sevices. Creating music is a form of worship and there is plenty of scripture in both the old and new testament to back up the claim that God considers it so. It saddens me that this person has at some point been made to feel musically inept and cannot connect with the way that music can lift our consciousness to our creator. Psalm 100 says make a joyful noise unto the lord God doesn't critique us the way our peers do. I now know that God wanted to make me happy by giving me this voice, and I really enjoyed myself that night. That some others have been moved by the music I made, well thats just Icing on the cake! Will try to post whiter shade of pale next weekend. Mindy the Artisan On Oct 17, 2009, at 3:20 PM, Todd Tarno wrote: Hey Mindy, Sorry, I miss seeing this when you posted it, my modem died and had to replace it. Thank you for sharing your beautiful voice with the group. Can't wait to hear more songs done by you. Keep up the beautiful songs, Todd in CC, TX --- On Mon, 10/12/09, Lawrence King we4king...@verizon.net wrote: From: Lawrence King we4king...@verizon.net Subject: [TMIC] OT- I sing To: tmic-list@eskimo.com Cc: Lawrence King we4king...@verizon.net Date: Monday, October 12, 2009, 1:34 PM Hi Guys, I wondered If I should send you this since it has nothing to do with TM but I figured since we have lost a lot of tmic-list saints recently I figured you could remember them while watching it. thats me singing at my debut concert, the traditional hymn for all the saints http://www.youtube.com/watch?v=4Gx2CJuGY18 Mindy the Artisan
Re: [TMIC] OT- I sing
So... Will anybody be crushed by my confession that 2 songs after this one I sang Procol Harum's Whiter Shade of Pale? Mindy the Artisan On Oct 14, 2009, at 9:09 PM, roseofr...@aol.com wrote: In a message dated 10/13/2009 7:25:38 A.M. Pacific Daylight Time, grace...@gmail.com writes: Mindy, You have a beautiful voice! Hugs, Grace . I second that!! Mindy, I would love to hear you sing, I Believe. If you ever post that, let me know. Hugs, Lynn
Re: [TMIC] OT- I sing- Gary in MI
Dear Gary, You moved me to tears. I believe that as this disease robs our loved ones of who they are here on earth they are preserved in wholeness in heaven. God be with you and your mother in the coming days. Mindy the Artisan On Oct 13, 2009, at 12:08 AM, Gary Thomas wrote: Mindy, Thank you for sharing the video of the beautiful hymn. Although she is still with us, my mother today was diagnosed with Alzheimer's and so her life as it has been will, little by little, no longer be. She came to Christ as a young girl and if it were not for she, I probably would not be a Christian. So, your hymn, speaking of saints and their past labors, was a blessing to me today. Gary in Michigan - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Monday, October 12, 2009 2:34 PM Subject: [TMIC] OT- I sing Hi Guys, I wondered If I should send you this since it has nothing to do with TM but I figured since we have lost a lot of tmic-list saints recently I figured you could remember them while watching it. thats me singing at my debut concert, the traditional hymn for all the saints http://www.youtube.com/watch?v=4Gx2CJuGY18 Mindy the Artisan
[TMIC] OT- I sing
Hi Guys, I wondered If I should send you this since it has nothing to do with TM but I figured since we have lost a lot of tmic-list saints recently I figured you could remember them while watching it. thats me singing at my debut concert, the traditional hymn for all the saints http://www.youtube.com/watch?v=4Gx2CJuGY18 Mindy the Artisan
Re: [TMIC] OT- I sing
Im so glad! this song is really about people like Rick and Pam who worked at helping others and not that handful of do-gooders recognized by popes and princes. Mindy the Artisan On Oct 12, 2009, at 3:00 PM, Cindy McLeroy wrote: Mindy, that was beautiful. A memorial service is being held this week end for Rick Steele and I am suppose to say something. This has helped inspire me. Cindy McLeroy - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Monday, October 12, 2009 11:34 AM Subject: [TMIC] OT- I sing Hi Guys, I wondered If I should send you this since it has nothing to do with TM but I figured since we have lost a lot of tmic-list saints recently I figured you could remember them while watching it. thats me singing at my debut concert, the traditional hymn for all the saints http://www.youtube.com/watch?v=4Gx2CJuGY18 Mindy the Artisan
Re: [TMIC] Prunes for those with a sweet tooth ~ ANTIBIOTICS PROBIOTICS
Mine and a few other doctors are beginning to but she's a DO rather than an MD. Osteopathic doctors are fully certified by the American Medical Association but are supposed to consider body, mind and spirit as a whole when diagnosing a persons condition, My DO was happy to hear I was a member of my church choir and Liturgical art's guild and made note of it in my file. I live in a town with an Osteopathic med school at Ohio University... it's an interesting place to receive healthcare. I often get a chance to speak directly to future doctors and you can bet I have fun doing so! Mindy the Artisan On Sep 21, 2009, at 11:40 AM, roseofr...@aol.com wrote: Regarding the problem you had with antibiotics. I don't understand why doctors don't prescribe probiotics along with their antibioticsor at least tell their patients to take themyou can buy them over the counter It would solve the bad bug problem and eliminate the diarrhea (sp?). Hugs, Lynn In a message dated 9/18/2009 11:37:26 P.M. Pacific Daylight Time, balmat...@aol.com writes: What's wrong with just eating the prunes? I've used dried fruits, prunes, apricots, etc. as well as food that has a lot of fiber like beans, depending on what the situation is over the past year and have finally been able to regulate myself. After 9 years of bowel problems, this has been so much help to me. I haven't had as much trouble with constipation as I have had with loose stools. Frankly, for me, constipation has been much easier to deal with, but that's my body. Now that I've said that, I hope things don't go back to having problems again. There were many times, sometimes for months, that I was afraid to leave my home. I suffered from C-diff, where the bad bugs had overtaken my gut and there were hardly any good bugs left. It has taken me a long time to balance that out again. That's what antibiotics can do to you if you take a few. Hugs to all, Barbara A -Original Message- From: roseofr...@aol.com To: jan...@centurytel.net; cherp...@msn.com; tmic-l...@eskimo.net Sent: Thu, Sep 17, 2009 9:58 am Subject: Re: [TMIC] Prunes for those with a sweet tooth Okay girls.if you want to make this cake more healthy:-) do not use the corn syrupthat is the worse thing you can put in your bodyuse the honey. also.substitute olive oil for the veg. oil. I learned from a chef that you can substitute olive oil for any oil in your recipesand you can substitute butter in any recipe that calls for shortening or margarine. I've been a happy baker ever since. :-) ~ Lynn
Re: [TMIC] My beloved husband Jim
May you feel the loving presence of God beside you as you move through the coming days. Jim was truly blessed to have you as his companion through his life's journey. Mindy the Artisan On 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] New Medications
I was on both Lyrica and 40 mg Cymbalta, I found that Cymbalta helped with the pain though I don't suffer from banding so I can't speak to that. It also helped with my anger and depression. As for side effects it made me want to sleep 16 hrs a day and I had difficulty multi-tracking my thoughts. After a major improvement in pain I weaned off Cymbalta this past spring. 100mg of Amantadine helps counteract the drowsiness. I would go back on Cymbalta if things got worse. Mindy the Artisan On Sep 3, 2009, at 9:35 AM, Robert Pall wrote: Readers of my postings will remember that I saw Dr Kerr in July and we decided to wean myself off of 2 of my medications. The first one I went off of was 4-Aminopyridine (a Potassium channel blocker) and the second med is Lyrica. Anyway I did not notice any change in my banding going off of the 4-AP however once I reduced the Lyrica from 450 mg per day (3 pills) to 150 mg per day (1 pill) the banding in both legs became much worse. Per Dr. Kerr I went back to 300 mg of Lyrica but the banding is still much worse. The new approach is to go back to my original meds and original dosages….but before Dr Kerr has me go back on the 4-AP he wants me to try adding Cymbalta to the Lyrica and see if that will reduce the banding. Question…do any of you take both Lyrica and Cymbalta and if so with what kind of results. If you only take Cymbalta has it helped and if so in what way….lastly what dosage do you take and are there negative side effects. Rob in New Jersey
Re: [TMIC] OT:My Pattern published!
Congratulations! do you have pictures on line somewhere that we can see the finished product? Mindy the Artisan On Aug 22, 2009, at 7:35 PM, Akua wrote: This is off Topic, but I am so full of complaints and disappointments--- that i share and work on here-- that i wanted to share a ray of hope. I got a box the other day from Simon and Schuster... i had not clue what it was til i opened it... My 2010 Crochet A Day Calendar arrived and my Flower Link scarf patternis in it! This particularly sweet, not only because the pattern was rejected by Interweave ( so if at first you don't succeed try, try again) but because my model was my visually challenged neighbor from the complex I stayed in, in Rochester while learning to live my life anew as a paraplegic and awaiting my home's rehab. It was a hellishly hard and horrible time and I missed the art i used to make and crochet was both a salvation and communication. I offered weekly crochet lessons in that building. The picture was taken on a sunny but chilly day in the courtyard I used to love to roll to... the pattern was about turning poison into medicine. by hand from heart --
Re: [TMIC] TM
Whoa there! your statement regarding true TM and Paralysis is incorrect! Acute TM means damage is done in a matter of hours or days. Sub-acute TM means damage over weeks. The information my Neuro gave me at the time of diagnosis stated that the rate of paralysis from TM was 50/50 I suffered sub-acute TM at C4-C5 in the spring of 2007. The MRI's and Spinal Tap analysis were pretty conclusive that I had TM. My leg weakness was very small and passed within a matter of hours, I was never incapacitated. My bladder difficulties (I could always pee with effort) passed in the first 6 months. Body and hand weakness took more than a year. My worst symptom was and continues to be acute pain (Central Pain Syndrome) from the shoulders down. My suffering led to a contemplation of suicide. Those of us who fall into the CPS only sufferers are a small minority among TM survivors but as a whole our prognosis for recovery is poor. The good news is that my only major improvement in pain has come after my 2nd anniversary. Mindy the Artisan On Jul 25, 2009, at 8:58 AM, fr...@franksheldon.com wrote: *Yes, a small lesion can affect a relatively small part of the body. Myelitis simply means inflammation of the spinal cord. Transverse, means *across*.* True transverse myelitis results in para or quadra plegia depending on the level of demyelination. I have a very small area of demyelination- C6, right side of spinal cord, size of a small pea- but it results affecting my whole body from my shoulders down. So you have a small lesion affecting an incredibly large area of the body. It's a bit like a gun shot wound- through my hand minimal treatment, through my heart maximum treatment, through my head death! My two cents F
Re: [TMIC] Friendships
I've not lost any friends and in fact, with the addition of all of you and the other groups I have joined on line as a result of this disease, my list of friends has increased tenfold. Major life changes always cause a shift in focus and friends who no longer have similar understandings often fade away. I left the craft word for the Antique restoration world and both lost and gained dozens of friends. As an extreme Introvert my definition of friendship is a little different than many; I find frequent contact taxing even with the people I love most, but I am grateful for the knowledge that there are a great many people who would be there for me should I need them. You encourage each other, You pray for each other; I have seen some of you actually make the effort to meet in person and I have watched as some of you even support each other financially in times of need. The new reality is that best friends can now meet and never see each others face. I meet people all the time who are too busy to consider having a new friend an I bet if we take an inventory of these internet friends many of us can say we have gained more than we have lost. Mindy the Artisan On Jul 23, 2009, at 1:10 PM, Janice wrote: I have another question that has been rolling around in my head. Have any of you lost/gained friendships after developing TM/ MS? Are some maybe solicitious about giving you a call periodi- cally, but you don't really see much of them? Or, are some of your friends from before TM becoming even better and closer friends. I am talking about emotional support, visits, outings, etc. I am wondering how many have stuck with you or traveled on after the initial onset and de-hospitalization period. Maybe it has stayed the same. Janice
Re: [TMIC] off Cymbalta
thats just it, I really noticed I was doing better because I had paid a big price for that kind of exertion in the past but this spring I noticed that I had lasting vigor from working up a sweat. My Pastor says that the English consider working the soil to be healing in a medicinal sort of way. I grieved two miscarriages by grabbing a shovel and doing landscaping till I literally dropped and it really helped. the garden is a little overrun as we were out of town for 11 days but otherwise great. need to get back into the dirt! Mindy the Artisan On Jul 23, 2009, at 1:13 PM, Janice wrote: Mindy, you really do great!How is the garden?Did you suffer any ill effects from the work involved? Let me know if you get into belly dancing - I bet you would do great. Janice - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King ; Janice Sent: Wednesday, July 22, 2009 10:33 PM Subject: Re: [TMIC] off Cymbalta Janice, I took great pride in my strength before TM hit. And in part my depression included fearing that strength was one of the things I lost. I first became aware of my improvement this spring when I was physically challenged by my dad (who is 80) to put in a garden with his help. I've always wanted to learn belly dancing and a year ago I said to myself guess that's one thing I won't get to do this lifetime think I'll prove that assumption wrong this fall. Mindy the Artisan On Jul 22, 2009, at 11:13 PM, Janice wrote: Mindy, I bet you didn't realize how strong you are - good go'in!! Janice - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Wednesday, July 22, 2009 10:20 AM Subject: [TMIC] off Cymbalta Hi folks, I weaned off Cymbalta very slow and methodically, removing 35 more grains per capsule every 4 days until there were only 35 left. I took the last dose one month ago and have been doing great. There were no ill effects during wean down and I am thrilled with my renewed energy and clear-headedness. I have 9 days left with which to prepare for the SeatWeavers' Guild meeting. So keep me and the event in your prayers! Mindy the Artisan
[TMIC] off Cymbalta
Hi folks, I weaned off Cymbalta very slow and methodically, removing 35 more grains per capsule every 4 days until there were only 35 left. I took the last dose one month ago and have been doing great. There were no ill effects during wean down and I am thrilled with my renewed energy and clear-headedness. I have 9 days left with which to prepare for the SeatWeavers' Guild meeting. So keep me and the event in your prayers! Mindy the Artisan
Re: [TMIC] arts
I love the Cry and was very happy when it was recovered. Went pumpkin hunting for Halloween about 10 years ago and saw a tall, twisted and skinny pumpkin and it reminded me of the face in the cry so I got it and made the cry jack-o-lantern. Looked wonderful! wish I could locate the picture. Mindy the Artist On Jul 1, 2009, at 8:54 AM, wim from holland wrote: I also started doing arts since TM. It comes with periods, sometimes a year nothing and then a few paintings in a short period. I started small but at the end I tried some larger ones, and it is nice to do. But there is one problem with kids who has to decorate there new homes, since they are one there own, some paintings, especially the larger ones are all confiscated by the kids. I am proud fo it ofcourse, luckely I still have the pictures. The two i send you are the largest ones, 80 x 100cm (32 x 40 inch). I copied them from photo's of the internet. They are both original from Evard Munch. Both were been stolen out of the Swedisch museum and found back 5 years later. But I had nothing to do with that, they are named The Madonna and The Cry. Tanks to Jim, who told me that the pictures and mails ate limited to 40k, I send them in two separate mails. Think I send you more, in the mail what it is, most of them are from pictures or photo's, with the help of a photo projector. Wim from Holland Alle tips en trics. Ontdek nu de nieuwe Windows Live
Re: [TMIC] Artist w TM in New York times
thanks Akua, I have to agree with you. and a better approach would have been hi, I'm a TM survivor too, your accomplishments are really inspirational... I can vouch for the fact that those openings are really exhausting and the last one I did was years before TM. On Jun 27, 2009, at 12:09 AM, Akua wrote: Gee, I guess I am a curmudgeon. I see no reason why anyone *must* answer questions from strangers. It's not getting the word out since most people have no manners, are nosy, crass and insensitive. I don't see his behavior as rude at all... at least not as described. . After all the public time and on his way away, he's asked if he has a disease that he has said he has and because he doesn't want to engage this is considered rude? The asker-- already knows about TM! Especially with the death of Michael Jackson, I feel sensitized to the strange expectations that people have, the demands and the intrusions. This artist has many high profile nights --- he was there to present his ART not his ILLNESS! When I first performed again after TM left me in pain paralyzed and wheelchair bound, the last thing I wanted to talk about was TM. Maybe you two feel differently because you are both still mobile. Creating is my respite from pain and limitation. I've lost several art forms because of TM. I can no longer make hot glass and my papermaking, which is plant based has been severely curtailed. It is hard to play the tenor sax in the wheelchair. I lost a publication -- I was hospitalized when my final edits were due to the publisher TM is an agonizing hell that I would not want to have reenter in some rare transcendent moment, I sure wish I had his limo and assistance getting to and from events. LOL! Akua You know there are some days after working over 8 hours, going to the pool 3 days a week and swimming 1/2 miles I am DONE also but NEVER, NEVER be that rude or cold to anyone!! anytime someone wants to ask about the wheel chair, my walker, ect I am nothing short of a chatter box!! lets get the word out! and if on this night he had some type of high profile night he shold have been an advocate for all of us! -- Original message from T Kanon sseco...@yahoo.com: -- Last night was the opening of this artist's exhibit at the Brooklyn Museum and I attended. Two people helped him walk down the aisle and onto the stage. It looked as if his hands were affected too. After the lecture I saw him in his wheelchair being taken to a limo. I went over to him and asked if indeed he had TM. He didn't even look at me and just said I'm done. A guard said he is very tired. I know he was tired but he was also very rude!!! Tobe Brooklyn NY --- On Wed, 6/24/09, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: [TMIC] Artist w TM in New York times To: tmic-list@eskimo.com Date: Wednesday, June 24, 2009, 9:42 PM very interesting article on interesting artist who had...transverse myelitis. and was paralyzed. but no longer is.. regained ability to walk after three years in a wheelchair http://www.nytimes.com/2009/06/21/arts/design/21sont.html? _r=1scp=1sq=shonibarest=cse -- You know there are some days after working over 8 hours, going to the pool 3 days a week and swimming 1/2 miles I am DONE also but NEVER, NEVER be that rude or cold to anyone!! anytime someone wants to ask about the wheel chair, my walker, ect I am nothing short of a chatter box!! lets get the word out! and if on this night he had some type of high profile night he shold have been an advocate for all of us! -- Original message from T Kanon sseco...@yahoo.com: -- Last night was the opening of this artist's exhibit at the Brooklyn Museum and I attended. Two people helped him walk down the aisle and onto the stage. It looked as if his hands were affected too. After the lecture I saw him in his wheelchair being taken to a limo. I went over to him and asked if indeed he had TM. He didn't even look at me and just said I'm done. A guard said he is very tired. I know he was tired but he was also very rude!!! Tobe Brooklyn NY --- On Wed, 6/24/09, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: [TMIC] Artist w TM in New York times To: tmic-list@eskimo.com Date: Wednesday, June 24, 2009, 9:42 PM very interesting article on interesting artist who had...transverse myelitis. and was paralyzed. but no longer is.. regained ability to walk after three years in a wheelchair http://www.nytimes.com/2009/06/21/arts/design/21sont.html? _r=1scp=1sq=shonibarest=cse -- --
Re: [TMIC] Facebook Page
I'm on face book! to become a friend go to facebook.com/ mindy.chairweaver Mindy the Artist On Jun 25, 2009, at 10:33 PM, Jim Lubin wrote: 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] AntiDepressant
I found going on Cymbalta very helpful even though I've remained walking wounded the entire time. I found it lifted my mood without interfering with my ability to address my life adjustment issues like the older generation of antidepressants would have done. This disease hit me hard even though I suffered less than most on this list because I tend to be terminally serious to begin with (my saving grace is I married a very comical person). Now a 1 3/4 years after starting cymbalta I feel ready to go off with my doctors blessing and over the last month I have gradually reduced the 30 mg dose down to 15mg. As I began writing this letter I thought it a good Idea to encourage you to try a depression test or 2 (google it and you'll find ton's) Then realized it would be a good thing to take my own advice as a measure of my weaning success and am happy to say that even at half the lowest available commercial dose I am not back sliding mood wise. If you take a few and find you are not depressed then tell your doctor, I'm sure he or she will be reassured by your findings. For me going an antidepressant has been a hand up to getting better and it's okay to ask for help! I no longer need that hand up but I acknowledge that having TM as an impairment I may need a hand up again when life throws me another curve ball. But now I know how to ask for it and how to get off of it as well! recovering Alcoholics in AA call trying to get sober by yourself white knuckle sobriety we TM survivors have enough pain in our lives, we don't need to white knuckle our mood on top of everything else we have to face. Mindy the Artist On Jun 19, 2009, at 4:12 PM, Akua wrote: One thing the neuro told me in ICU was that an antidepressant was very important because of having to go thru all of the issues of being paralyzed and the changes I would have to go thru with my life. When the Drs said that to me, I wanted to slap them. I wanted a laptop, not a pill. I felt like they were setting me up for further disability. Of course I was unhappy. Fearful even, but I wasn't depressed. I never approached depression til last year when i came home to ramps i couldn't use, no transport and an inaccessible shower--- after waiting over a year for the house rehab by an agency that paid an alleged expert to oversee the construction. This is about externalities blocking me. Too bad the money I don't spend on drugs is not available to me to do the other things I need done: another hour or two of an aide, paratransit, help weeding in the yard, an accessible front ramp, a lift to my second floor... little things that would make a HUGE difference in the quality of my life. Or even--- dare I say--- fixing the condition: a standing machine, an exerciser, water therapy, stem cell therapy... instead of all or any of these things, instead of addressing causes or even teaching me how to live as a paraplegic --- all or any of these --- fix or assist with them before you deem me depressed and prescribe a pill. --
Re: [TMIC] Relationships
I believe karma is strictly an interpersonal thing and that there are many factors in the world which are driven by the nature of our universe. Good and bad things happen with out regard to who it affects. Karma had nothing to do with the plague, the 2004 tsunami, the 1918 flu pandemic, there is a chaos to our world and we are subject to it. Especially when it comes to illnesses! I believe we all are survivors of a random event of viral chaos. In fact everyone (and for that matter every living thing) on earth who lives long enough will experience some form of debilitation. Karma, the golden rule, turning the other cheek--- they're just philosophies we can chose to aid us in our learning to cope and they are great ideas that can enrich our lives significantly. I hate the phrase things happen for a reason Some things do but I think many more things do not and I believe Not one of us brought this upon ourselves because we were bad! Our creator loves us just as much as those who are whole in body. remember: Blessed are the poor in spirit for theirs is the kingdom of heaven The key is that we have an opportunity to give reason to what has happened to us. Or, we can be crushed by our circumstances. This choice is our free will in action. Looking for blame in ourselves or others allows us to pass the buck and not move forward. I had a period of suicidal thinking right after High school and when I told a friend, rather than expressing concern or sympathy she launched in and verbally whooped my ASS for having so many blessings and thinking my life was something I could just throw away. Angels come in many forms and I thank God for that memory. Mindy the Artist Down to the half dose level in my Cymbalta weaning and doing great! On Jun 15, 2009, at 9:26 AM, ladyno...@aol.com wrote: Kevin, I also believe in Karma and also tried to live my life according to the golden rule. Which makes me wonder, if I did something so bad to someone, that I would end up in this situation. If I made any mistakes that warrant this, I would remember. It's hard to say that people reap what they sow when I'm in the condition I'm in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!
Re: [TMIC] antidepressants
dear Jude, patti, Jim and Marieke, While I haven't spent a long time thinking about getting off The antidepressant because I had not noticed my improvements until they reached the level of obvious and dramatic but I did weigh the pros and cons and I was the one who asked the doctor to put me on it in the first place. I know I have more to come to terms with in my life after TM but my body was not as affected as many others have been, Although my damage is at C4-C5 I never lost mobility. My gait is natural and none of my friends ever suspected I was Ill. but the pain from my chest down was shocking... literally! its like I've had my finger stuck in a light socket for over 2 years. When I went on Cymbalta I wanted to quell the urge to jump off a cliff to make the pain stop and I was angry that my otherwise able body should be filled with incapacitating pain. Now that the pain has lessened I feel that the drugs side effects: drowsiness, fogginess, weight gain and some funny attitudes that are hard to describe are getting in the way of my goals for this day and the future. I've got 40 capsules left and I thought I'd take a full month or more to slowly ween down. today I took a cap with 10 grains removed and I figured I'd stay with that for a few days before moving to 20 grains. I am still on Lyrica and it doesn't make me so sleepy, If I miss the pain reduction of Cymbalta I'll ask for an increase of Lyrica. I will also have my Husband and Kids watching me 24/7 now that school is out (hubby teaches High school) my 14 year old daughter is very observant and we communicate quite well so she'll be in on the mom watch if any time is good for me to try to go off this is it. I think I'll also write in to you guys every reduction I make. Thanks for all your help! Mindy the Artist On May 30, 2009, at 9:59 AM, heyjude48...@aol.com wrote: Dearest Mindy, It has only been two years for you. That is not a long time and even though you may feel that you are emotionally healed and have accepted your life the way it is now, I doubt that you have. You would be exceptional if you were that stable. I'm not saying that you are not stable, but from experience, I know how big the losses are with TM and they sneak up on you years after you think you are finished with them. I would like others to comment on this one. It's very important and I am interested in what you have to say. Even with blessings from your doctor, Mindy, I would be very careful and think this through thoroughly. I love you so much and only want you to be safe, healthy and happy. Love and Prayers, Jude In a message dated 5/29/2009 2:45:06 P.M. Eastern Daylight Time, we4king...@verizon.net writes: Dear friends. I am continuing to feel better. Now that I look back I can see that I have been Improving for about a month even though I'm passed the 2 year mark. The hope it has given me above and beyond the general coming to terms and acceptance that one should reach by their 2 year mark, has made me decide that I am ready to get off my antidepressant. I have read that Cymbalta is very difficult to come off of and that other people have had good results opening the capsules and reducing the dose incrementally themselves every few days. I just spoke with my doctor and have her blessing in this endeavor as she has had other patients wean off successfully doing this. Cymbalta saved my life and helped with the nerve pain in ways that other antidepressants do not but I am ready to face the world again. Will keep you all informed of my progress! Mindy the Artist = We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.
[TMIC] antidepressants
Dear friends. I am continuing to feel better. Now that I look back I can see that I have been Improving for about a month even though I'm passed the 2 year mark. The hope it has given me above and beyond the general coming to terms and acceptance that one should reach by their 2 year mark, has made me decide that I am ready to get off my antidepressant. I have read that Cymbalta is very difficult to come off of and that other people have had good results opening the capsules and reducing the dose incrementally themselves every few days. I just spoke with my doctor and have her blessing in this endeavor as she has had other patients wean off successfully doing this. Cymbalta saved my life and helped with the nerve pain in ways that other antidepressants do not but I am ready to face the world again. Will keep you all informed of my progress! Mindy the Artist
Re: [TMIC] Improving?????
I started on Lyrica in the spring of 2007 and added Cymbalta in the fall 2007. It helped tremendously with the pain and my depression but also made me sleepy. Adding Amantadine 100mg morning and noon help counteract drowsiness but if you're not depressed I'd stay off. Cymbalta saved my life but I hear it is hellish to wean off of. I've heard of some people opening up capsules and removing grains to make successively lower doses to help withdrawal and if I continue to feel better and stronger I want to get off it first. I don't mind staying on Lyrica as I do really well on it . Mindy the Artist On May 25, 2009, at 5:38 AM, pwi1991...@aol.com wrote: Hi Mndy are you saying that cymbalta makes you sleep a lot or it is better for pain. My neuro wants to put me on. Is this a side affect for you? I am afraid to take them from hearing about these side effects I take Flexril and it makes me so drowsy. Will you give me some points? I do hope you get better Peggy Wilson In a message dated 5/24/2009 9:11:43 P.M. US Mountain Standard Time, we4king...@verizon.net writes: I've had a week of less pain over all and almost no buzz when I tip my head down ( L'hermittes' sign) have been able to use a hoe and shovel in the garden my father (he's 81 and healthy as a horse) helped me plant. One year ago I was in too much pain and depression to plant things and left the small garden my husband and kids planted to go to seed. keep me in your prayers! Perhaps I'll be able to wean off Cymbalta and not need to sleep 16 hours a day Mindy the Artist = We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.
[TMIC] Improving?????
I've had a week of less pain over all and almost no buzz when I tip my head down ( L'hermittes' sign) have been able to use a hoe and shovel in the garden my father (he's 81 and healthy as a horse) helped me plant. One year ago I was in too much pain and depression to plant things and left the small garden my husband and kids planted to go to seed. keep me in your prayers! Perhaps I'll be able to wean off Cymbalta and not need to sleep 16 hours a day Mindy the Artist
Re: [TMIC] Fw: my transverse myelitis story
I recently passed my 2 year mark and today I am going to try out a TEN's unit so wish me luck! Mindy the Artist On May 7, 2009, at 10:25 AM, Tami Streeter wrote: Janice, Thank you for saying this about the 2 year mark. I am getting close to it and found myself getting nervous and down thinking “this is it”. You guys keep me going! Thanks, Tami From: Patricia Cooley [mailto:patticoo...@wi.rr.com] Sent: Thursday, May 07, 2009 9:21 AM To: 'Janice'; 'Amanda Diskey'; pjv1...@chartermi.net; tmic- l...@eskimo.com Subject: RE: [TMIC] Fw: my transverse myelitis story YOU ARE RIGHT JANICE. I GUESS AS LONG AS I AM DRAWING A BREATHE I WILL HOPE AND WORK TOWARDS ANY IMPROVEMENT NO MATTER HOW LONG IT TAKES. THANKS FOR THE ENCOURAGEMENT. PATTI IN WISCONSIN From: Janice [mailto:jan...@centurytel.net] Sent: Wednesday, May 06, 2009 8:38 PM To: Patricia Cooley; 'Amanda Diskey'; pjv1...@chartermi.net; tmic- l...@eskimo.com Subject: Re: [TMIC] Fw: my transverse myelitis story Amanda and Patti, When you think of the 2-year mark, don't be too disappointed if you are not where you want to be. I let it be a big thing for me and was panicky when 2 years came and I wasn't where I wanted to be and felt there would be no more recovery. Recovery still happens. Your body doesn't know 2 years from butkus!The doc's are only saying the biggest hunk of recovery comes a b o u t then. There will be more. Also, I think something happens in the adjustment to your body. You begin to accept, but are still working for improvement. At least, that was the way it is for me at 28 months of TM. Janice - Original Message - From: Patricia Cooley To: 'Amanda Diskey' ; pjv1...@chartermi.net ; tmic-list@eskimo.com Sent: Wednesday, May 06, 2009 10:37 AM Subject: RE: [TMIC] Fw: my transverse myelitis story AMANDA: IT IS OBVIOUS THAT YOU HAVE BEEN PUT THROUGH THE WRINGER. I AM SO SORRY FOR ALL YOU HAVE SUFFERED. I WAS DIAGNOISED WITH TM LAST JUNE. WHEN IT HAPPENED I WAS UNABLE TO MOVE MY LEGS AND HAD NO FEELING. IN THE LAST 11 MONTHS I HAVE COME A LONG, LONG WAY. THE BIGGEST CHANGE HAS BEEN IN THE LAST 2-3 MONTHS. I HAD BEEN ABLE TO USE A WALKER, BUT I FIGURED I WOULD NEVER BE ABLE TO USE A CANE. BUT, ALL OF A SUDDEN I FIND THAT I CAN USE A CANE AND EVEN WALK WITHOUT A WALKER OR CANE. I DO NEED TO GRAB HOLD OF FURNITURE OR THE WALL, BUT I AM ABLE TO WALK SHORT DISTANCES. SO PLEASE DON’T GIVE UP. KEEP UP WITH YOUR THERAPY. I THINK IN MY CASE I WAS FORTUNATELY DISGNOISED IMMEDIATELY AND PUT ON STEROIDS RIGHT AWAY. EVERYONE HAS SAID THAT IMPROVEMENT COULD HAPPEN WITHIN THE FIRST 2 YEARS, SO WE HAVE A LONG WAY TO GO BEFORE WE REACH THAT POINT. DON’T GIVE UP. WE ARE HERE FOR EACH OTHER SO KEEP US POSTED. PATTI IN WISCONSIN From: pjv1...@chartermi.net pjv1...@chartermi.net To: tmic-list@eskimo.com; Amanda Diskey adis...@yahoo.com Sent: Wednesday, May 6, 2009 6:38:49 AM Subject: Re: [TMIC] Fw: my transverse myelitis story Amanda, I have chills from reading your story and I think they started when I read that you can wiggle your toes. I hope you continue to acquire movement and will keep us up-to-date on your accomplishments. I was still healing at nine months and pray that you are too. Patti - Michigan Amanda Diskey adis...@yahoo.com wrote: - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: wllo...@tampabay.rr.com Sent: Tuesday, May 5, 2009 12:33:53 PM Subject: my transverse myelitis story Hello, I am Amanda a 30 year old single mother of two awesome kids, and this is my story about the worst day of my life! I got up that day and helped my boyfriend clean his daddy's house, we ate lunch when we were finished, and I went outside for a smoke. While smoking my cigarette I started having chest pains, and my right arm was hurting so I went back in and laid on the couch. About an hour later, or maybe more, I decided to go to the ER in case I was having a heart attack. They took me back immediately, but they could find nothing wrong with me. After six hours of tests I told them the chest pains were probably caused by my GERD (acid reflux) because it had happened to me before, and I wanted to go on home. After I left i noticed one of my knees buckled every time I took a step, but I didn't think much of it. I went to bed early cause I just didn't feel good, and I woke up about 11 p.m. because my back was on fire like it was sunburnt. There was a rash across my shoulders and down my spine. I was feeling really bad, and I told my boyfriend I needed to go back to the hospital. When I went to get out of bed I almost fell in the floor, but he caught me. I could not stand so he had to carry me to the car along with both kids. So here we go, I have to stop on the way and started throwing up over and over again. I finally get to my second hospital of the day only to run tests until
Re: [TMIC] Balance
I lose my balance when I close my eyes too. my PT said I have lost my somatosensation and that I need to protect my eyes because it's my sight that is keeping me upright and 90 degrees from the horizon line, parallel to doorways and lampposts etc... look ahead and not down at my feet when walking! Mindy the Artist On Apr 15, 2009, at 1:01 AM, L T CHERPESKI wrote: IOh yes, right with you ladies on all of that. I always touch something when I'm standing too, Janice. And Barb, for heavens sake. How in the world could you stand on a pillow with your eyes closed and lean in any direction. You are one brave woman. I also cannot close my eyes and have any balance - and I get a panic feeling when the power has gone out due to a storm and my house is completely dark. I lose all perception. We TMers are different in some ways and yet so much alike in other ways. Linda - Original Message - From: Janice To: jharpe...@aol.com ; mother...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, April 14, 2009 6:43 PM Subject: Re: [TMIC] Balance Barb, I am exactly the same way with balance. I didn't realize it until I read what you said. I always touch something when standing, etc. Doesn't take much, but I seem to need it too.Janice - Original Message - From: jharpe...@aol.com To: mother...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, April 14, 2009 8:32 AM Subject: Re: [TMIC] Balance Yes, that's one of my continuing problems. My balance is worse when standing still (even with eyes open) than walking, though I sometimes lose balance while walking, too. When I was taking physical therapy, my PT had a name for that, but I don't remember what it was. She had me stand on a pillow with my eyes closed and lean as far as I could in one direction and then another while she stood by to catch me if I fell (don't try this at home alone!!!) It's improved, but it is still a factor. Sometimes at church a larger group will be singing across on stage just holding their music, and I think, I could never do that! I ended up leaving choir because I felt like I couldn't keep my balance. Having some reference point helps -- the back of my legs touching a chair or just touching a table or the wall. I don't need to hold on to or lean on something, usually -- just have something to touch. Barbara H. http://barbarah.wordpress.com In a message dated 4/14/2009 9:25:04 A.M. Eastern Daylight Time, mother...@gmail.com writes: P. S. I cannot close my eyes and balance myself. I get dizzy.. anyone else??? The Average US Credit Score is 692. See Yours in Just 2 Easy Steps!
Re: [TMIC] Campaign To Cure Paralysis
I'm counted. Picture included... Mindy the Artist On Apr 10, 2009, at 2:16 PM, Jim Lubin wrote: Be counted! Put yourself on the map. http://www.campaigntocureparalysis.org/
[TMIC] Support Access to e-books for People with Disabilities
I just got this from NSCIA and thought it was worth your attention. Mindy the Artist Begin forwarded message: From: NSCIA subscr...@spinalcord.org Date: April 7, 2009 2:39:26 PM EDT To: we4king...@verizon.net Subject: Support Access to e-books for People with Disabilities As part of its role in the Reading Rights Coalition, NSCIA is engaged in a campaign to obtain access for people with print disabilities to e-books available for Amazon’s new Kindle 2 e-book reader. The new reader, which Amazon is working to make fully accessible, has the ability to use text-to-speech to read these e- books aloud; but under pressure from the Authors Guild, Amazon has announced that authors and publishers will be allowed to disable the text-to-speech function. Please read and sign the petition. Language is fundamental to being human, and access to information - whether for education, entertainment or communication - is an integral part of life. In fact, it's how many living with disabilities find access to the information and resources they need to achieve the highest possible quality of life. Restricting that for any reason is not acceptable. Like screen readers and other forms of text to speech, electronic book readers will provide greater access to information for all people K. Eric Larson, executive director and CEO of NSCIA, said recently. More than 25 organizations have joined to form the Reading Rights Coalition, which has set up an on-line petition to urge the Authors Guild and Amazon to reverse course. If you are using screen access technology, the first three fields on the form to sign the petition may not be announced. They are, in order: (1) a drop-down menu from which to select your prefix (Mr., Mrs., etc.); (2) an edit field for your first name, and (3) an edit field for your last name. The rest of the fields should announce themselves as you tab to them. http://www.thepetitionsite.com/1/We-Want-To-Read -- If you do not want to receive any more newsletters, click this link To update your preferences and to unsubscribe visit this link Forward a Message to Someone, visit this link powered by phplist v 2.10.9, © tincan ltd
Re: [TMIC] stem cell (OT?)
I'm not implying that at all. I just didn't go into that definition for the sake of brevity. The light hearted comment about turning 18 meant that every child takes a tremendous amount of life support to raise. but if you insist on a definition: I believe that any infant who is alive at the time of onset of labor (whether natural or surgical) is entitled to what ever life support we have to offer. In some cases like ancephaly there are hard choices for parents to make. But I am sharing my views and not writing a policy that will be used to make life and death decisions beyond my own family. Mindy the Artist On Mar 27, 2009, at 9:03 AM, jharpe...@aol.com wrote: Mindy, by that logic, a baby who needed life support at birth would not be entitled to it. I've known many families of children born prematurely who needed a great deal of help at first, but who grew and thrived with help, including ventilators. Barbara H. http://barbarah.wordpress.com/ In a message dated 3/25/2009 8:27:24 P.M. Eastern Daylight Time, we4king...@verizon.net writes: My experience also led me to the conclusion that a life that cannot survive outside the mother is not entitled to citizenship rights equal to that of the mother until it is mature enough to survive once the umbilical cord is cut (or has turned 18, which ever comes first). Mindy the Artist Free Credit Report and Score Tracking! Get it Now for $0 at CreditReport.com.
Re: [TMIC] stem cell (OT?)
Ah Barbara, the problem with email is that it's not a 3 dimensional form of communication. face value is very different when you are actually face to face! now I see what you're referring to... In the 6 years between the birth of my daughter and the birth of my son ideas on healthy pregnancy did a 180 and everyone felt entitled to tell you what you needed to do even if you weren't doing anything bad in the first place I was an older mom and read every book I could before methodically trying to conceive and then methodically solving my miscarriage issues. When I was pregnant with my son I went to the clinic on the 18th day after conception and said to the doctor skip the pregnancy test cause I am, just test my progesterone levels and see if it's okay (I needed to supplement) So as you can Imagine I got testy when people seemed to care more for the unborn infant than me, I was better informed that most of the advice givers and it was still my body. Mindy the Artist On Mar 27, 2009, at 3:56 PM, jharpe...@aol.com wrote: Thanks for the clarification. Just taking the statement at face value it sounded different. Barbara H. http://barbarah.wordpress.com/ In a message dated 3/27/2009 12:58:11 P.M. Eastern Daylight Time, we4king...@verizon.net writes: I'm not implying that at all. I just didn't go into that definition for the sake of brevity. The light hearted comment about turning 18 meant that every child takes a tremendous amount of life support to raise. but if you insist on a definition: I believe that any infant who is alive at the time of onset of labor (whether natural or surgical) is entitled to what ever life support we have to offer. In some cases like ancephaly there are hard choices for parents to make. But I am sharing my views and not writing a policy that will be used to make life and death decisions beyond my own family. Mindy the Artist On Mar 27, 2009, at 9:03 AM, jharpe...@aol.com wrote: Mindy, by that logic, a baby who needed life support at birth would not be entitled to it. I've known many families of children born prematurely who needed a great deal of help at first, but who grew and thrived with help, including ventilators. Barbara H. http://barbarah.wordpress.com/ In a message dated 3/25/2009 8:27:24 P.M. Eastern Daylight Time, we4king...@verizon.net writes: My experience also led me to the conclusion that a life that cannot survive outside the mother is not entitled to citizenship rights equal to that of the mother until it is mature enough to survive once the umbilical cord is cut (or has turned 18, which ever comes first). Mindy the Artist Free Credit Report and Score Tracking! Get it Now for $0 at CreditReport.com. = Check all of your email inboxes from anywhere on the web. Try the new Email Toolbar now!
Re: [TMIC] going to DC
Try to find the Albert Einstein memorial near the Vietnam Vets Memorial Constitution Ave. we wanted to get there but the bone chilling cold 9F. got the better of us and we gave up on both. It's a site most tourists miss and don't know about. and the museum of natural history is renovated and wonderful... you can see the hope diamond. I want to hear about it when you get back! On Mar 26, 2009, at 9:09 PM, ptpatti200...@aol.com wrote: Mindy the Artist Thanks Mindy I found the info on the tourmobile before we decided that I needed some sort of transport and I forgot about the wheelchair storage on the bus so that link was helpful. . It will be perfect. I found that it was the only bus through the cemetary - one of our desired stops. I know we are going to use their two-day pass and see all of those sights. Did you have a special spot that I might miis if I wasn't aware of it in advance? I'm taking all the advice I can get. Thanks Patti - Michigan -Original Message- From: Lawrence King we4king...@verizon.net To: tmic-list@eskimo.com Cc: Lawrence King we4king...@verizon.net Sent: Wed, 25 Mar 2009 2:38 pm Subject: Re: [TMIC] going to DC Hi Patti, We went to DC in Jan for my father-in-laws funeral at Arlington Natnl. Cemetery and decided it was now or never to show the kids DC. What ever your needs are I encourage you to take this tour bus: http://www.tourmobile.com/disability.phpand not the other ones. I believe it cost us $32 per adult a day and we could get on and off at will. I am walking wounded and would have been in agony if I had to walk from monument to monument. I gave you the disability page so you can discuss your needs with them. this is the only tour that has Natln. park service affiliation (and the monuments are a natnl. park) and be happy there are accommodations at all the monuments to allow full access regardless of your level of ability. So enjoy yourself and wear an Obama button (the workers will be friendlier) Mindy the Artist Jeanne What a story! You couldn't make that up if you tried and I think it's better (or worse) than anything I've seen on House. Your miracle is that you lived long enough to get to the right hospital and that they started you on steroids. Thanks for sharing the details. You brought up the subject of maneuverability and I need help dealing with it. I decided it was time to go to Washington DC - a long-time desire of my hubby and myself. I always use a cane and have a wheelchair that I loaned out a year ago, but could get back. I quit wearing my AFO after two years because my feet burn and I prefer to wear shoes that I can take off every time I sit down (even in public.) I looked pitiful sitting with my brace beside me letting my feet breathe. So, I will need to use a walker and/or be pushed in a wheelchair in Washington and am concerned about my hubby lifting the chair in and out of our car. I have looked at 3 wheeled walkers that would be easier to maneuver in crowds, 4 wheeled walkers of all kinds, a 4 wheeled that turns into a transport chair ($400), and just a simple transport chair itself A transport chair is a wheelchair for being pushed in, with (4) ten- inch wheels instead of the large wheels on the back for self- maneuvering. The transport chair ! is about 12 lbs. lighter than my wheelchair and would be easier to get into my small car. The 4 wheeled walker that turns into a wheelchair is $400 on-line. A transport wheelchair is $200 at Walmart. I can buy a 3-wheeled or a 4-wheeled walker for $50 each on Craigslist. What would YOU take to Washington DC? What will I need? How will I feel using one for the first time? I DON'T want to have to use any of them! I'm ANGRY! Patti - Michigan Need a job? Find employment help in your area. = Need a job? Find employment help in your area.
Re: [TMIC] Embrionic Stem Cell Discussion
Jim, I have even more respect for your view now that you have explained it in such a personal way. I haven't changed my own view but I love getting to wear the other persons moccasins (I'm Christian and my best friend is Buddhist). I'm thrilled at how well this discussion has gone (can we talk about race next... just kidding) Mindy the Artist On Mar 26, 2009, at 8:02 PM, Jim Lubin wrote: They are just going to throw those unused blastocysts away only because someone is making the choice to do so. After they are created they remain frozen indefinitely until a decision is made by someone to remove them from their frozen state. I've seen the argument be made that they are going to die anyway so why not use them to help others, such as organ donation. I started thing about that reasoning a few years ago. As someone who is only being kept alive by a ventilator breathing for me I began thinking that someone could decide that if I was taken off the ventilator I would die anyway so why not use my organs to better someone else's life. Someone might decide that my heart, my liver, my lungs would be better used by someone else who might be more important or more productive, less of a burden cost wise, to society. I am not an organ donor. Remember the Terri Schiavo case in 2005? It was a big topic on the vent-users list. Her husband claimed she was in a Persistent vegetative state, her family said she was not. The media kept saying they want to remove her from life support. She was not on life support, she had a feeding tube. Big difference. A ventilator is life support. Her feeding tube was removed and she was starved to death because nutrition was withheld. It was very scary to everyone who is on life support they way people were fighting to get her feeding tube removed. If people felt so strongly about her being removed what about us? I believe that human life begins at conception and that those blastocytes should be protected until natural death. Use them what they were created for or keep them frozen (i.e. on life support). I don't think these blastocytes should have been created in the first place, if a couple can't have a baby without intervention then it's not meant to be. That's just what I believe. Obviously it's legal so the world doesn't operate the way I believe. Jim At 10:24 AM 3/26/2009, Westgold wrote: They just throw those unused blastocytes in the garbage, they end up in some medical waste dump somewhere. Would you rather than that, than see those cells being used to help cure a lot of horrible diseases? You say that you support organ donation -- isn't giving these blastocytes a chance to help save somoene's life similar to organ donation? Don't you think they would rather do some good with whatever life they have, rather than just be thrown in a dump? Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] going to DC
Hi Patti, We went to DC in Jan for my father-in-laws funeral at Arlington Natnl. Cemetery and decided it was now or never to show the kids DC. What ever your needs are I encourage you to take this tour bus: http://www.tourmobile.com/disability.phpand not the other ones. I believe it cost us $32 per adult a day and we could get on and off at will. I am walking wounded and would have been in agony if I had to walk from monument to monument. I gave you the disability page so you can discuss your needs with them. this is the only tour that has Natln. park service affiliation (and the monuments are a natnl. park) and be happy there are accommodations at all the monuments to allow full access regardless of your level of ability. So enjoy yourself and wear an Obama button (the workers will be friendlier) Mindy the Artist Jeanne What a story! You couldn't make that up if you tried and I think it's better (or worse) than anything I've seen on House. Your miracle is that you lived long enough to get to the right hospital and that they started you on steroids. Thanks for sharing the details. You brought up the subject of maneuverability and I need help dealing with it. I decided it was time to go to Washington DC - a long-time desire of my hubby and myself. I always use a cane and have a wheelchair that I loaned out a year ago, but could get back. I quit wearing my AFO after two years because my feet burn and I prefer to wear shoes that I can take off every time I sit down (even in public.) I looked pitiful sitting with my brace beside me letting my feet breathe. So, I will need to use a walker and/or be pushed in a wheelchair in Washington and am concerned about my hubby lifting the chair in and out of our car. I have looked at 3 wheeled walkers that would be easier to maneuver in crowds, 4 wheeled walkers of all kinds, a 4 wheeled that turns into a transport chair ($400), and just a simple transport chair itself A transport chair is a wheelchair for being pushed in, with (4) ten-inch wheels instead of the large wheels on the back for self-maneuvering. The transport chair ! is about 12 lbs. lighter than my wheelchair and would be easier to get into my small car. The 4 wheeled walker that turns into a wheelchair is $400 on-line. A transport wheelchair is $200 at Walmart. I can buy a 3-wheeled or a 4- wheeled walker for $50 each on Craigslist. What would YOU take to Washington DC? What will I need? How will I feel using one for the first time? I DON'T want to have to use any of them! I'm ANGRY! Patti - Michigan Need a job? Find employment help in your area.
Re: [TMIC] stem cell (OT?)
tAs a mother who conceived (the natural way) 6 times but only gave birth to 2 live infants I feel qualified to remind the greater community that every successful conception does not equal a child born even in natural circumstances, much less conceptions that occur in a dish. I mourned each one of those miscarriages as a child lost even after my 2nd child was born and I knew in my heart that my family was complete and that I was done with the baby stage of my life. My experience also led me to the conclusion that a life that cannot survive outside the mother is not entitled to citizenship rights equal to that of the mother until it is mature enough to survive once the umbilical cord is cut (or has turned 18, which ever comes first). When I got my drivers license I asked for an organ donor sticker and informed my parents of my wishes in the event of my death. As a parent I could be called upon to make a similar decision should a child of mine suffer a life ending tragedy... that the purpose of his or her short life can take on new meaning by giving life to others. whether you consider them blastocysts or babies, the couples who conceived them have already made the decision that they will never be born and have a meaningful purpose outside the petri dish. I truly believe the parents should have the right to decide the fate regarding the use of their unused fertilized egg's stem cells as well. Just as Jehovah's Witnesses refuse blood transfusions on the basis of their beliefs, each one of us has the right to refuse any treatment we are uncomfortable with. but as for me, I donate blood (4 gallons), gave a sample to the bone marrow registry and if Dr. Kerr can use my middle aged eggs to heal others then he is welcome to them. Mindy the Artist The problem I have with defining life as Gunny has as not beginning until 28 days after conception (the joining of the male sperm and the female egg) is that once conception occurs the zygote contains all of the genetic information (DNA) necessary to become a child. Half of the genetic information comes from the mother’s egg and half from the father’s sperm. The zygot continues to divide, creating an inner group of cells with an outer shell. This stage is called a blastocyst. The inner group of cells will become the embryo, while the outer group of cells will become the membranes that nourish and protect it. To me it makes sense the life begins at conception, as a single cell zygote, since at that point it contains everything to make a unique, individual and continues to divide on it's own. It happens without brain. Embryonic stem cell come from the blastocyst stage 4–5 days post fertilization, at which time they consist of 50–150 cells. Every biology reference I have found talks about the beginning of life being the union of the two gametes, the male and female reproductive cells of any species. Jim I suggest reading, Declaration On The Production And The Scientific And Therapeutic Use Of Human Embryonic Stem Cells http://www.vatican.va/roman_curia/pontifical_academies/acdlife/ documents/rc_pa_acdlife_doc_2824_cellule-staminali_en.html - Original Message - From: bgunny7...@aol.com To: gbthomas8...@sbcglobal.net Sent: Wednesday, March 25, 2009 11:18 AM Subject: Re: [TMIC] stem cell (OT?) In a message dated 3/25/2009 11:06:05 AM Eastern Daylight Time, gbthomas8...@sbcglobal.net writes: Our former president, George W. Bush, so direspectfully referred to on this list as dumdum, was simply against the use of our tax money for embryonic stem cell research in consideration for those opposed, on moral grounds, to the use of aborted fetuses. Stem cell research was not stopped. It has widely been proclaimed (even on this list) that adult stem cell research has actually been more successful than embryonic cell research Not necessarily aborted fetus's. Embryonic stem cells can be grown in a petri dish simply by marrying a male sperm with a female egg. It has nothing to do with an abortion at all. Adult stem cells have already been programmed, which are taken from an adult human, to make that persons body. When taken, they are cleaned by a process known as plasma pheresis, then reinjected into that same person. An embryonic stem cell has NOT been programmed to make anything yet. It can be coaxed to do so where an adult cannot. An embryo is considered just that because it does not become a fetus until it is infused with blood. That process doesn't happen until twenty eight days after conception, and, it has no brain. Taking that into consideration, it is not alive. It can become so if implanted into a female uterus, but not until. So, in all actuality, it just sits in that petri dish doing absolutely nothing. I hope this gives you better insight as to what an embryonic stem cell is. Gunny Jim Lubin
Re: [TMIC] blood, tissue, organ donation
I called the red cross and told them my history, listed my medications and asked them to investigate if I was still eligible and a few days later I was told I could resume donating. Mindy the Artist On Mar 25, 2009, at 8:58 PM, gor...@earthlink.net wrote: Re: I donate blood (4 gallons), gave a sample to the bone marrow registry. I am interested that you give blood and bone marrow. I was told I could no longer donate because, although my TM was considered idiopathic (don't know what caused it), the possibility that it was an autoimmune factor led them to nix me as a blood donor as well as concerns about tissue and organ donation - with the exception of the corneas I believe. I haven't explored it since then and it has been ten years. Maybe things have changed. Can you enlighten me to the discussions you may have had concerning allowed donation? Thanks. - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Wednesday, March 25, 2009 8:25 PM Subject: Re: [TMIC] stem cell (OT?) Re: I donate blood (4 gallons), gave a sample to the bone marrow registry.
Re: [TMIC] stem cell (OT?)
Jim, I do respect your beliefs and your extensive knowledge regarding stem cell research. I'm guessing you would consider treatment derived from adult lines but might decline so called embryonic lines. I'm sure we'd all be relieved if adult stem cells turned out to be the best solution after all. As for the Omnibus Appropriations act I admit my BFA degree doesn't help me understand the legal language used in such bills. Could you interpret it in common language? Mindy the Artist On Mar 25, 2009, at 10:27 PM, Jim Lubin wrote: I know I am in the minority in my believes, but I do not believe in IVF that creates embryos to begin with. If these embryos were not being created to then there would be no so called leftover embryos. Are you aware that President Obama signed H.R. 1105, the “Omnibus Appropriations Act, 2009,” on March 11th (2 days after signing the executive order to lift the ban on federal funding of embryonic stem cells) that contained the following: The text of Section 509 of the Omnibus Appropriations Act, 2009, reads as follows: SEC. 509. (a) None of the funds made available in this Act may be used for (1) the creation of a human embryo or embryos for research purposes; or (2) research in which a human embryo or embryos are destroyed, discarded, or knowingly subjected to risk of injury or death greater than that allowed for research on fetuses in utero under 45 CFR 46.204(b) and section 498(b) of the Public Health Service Act (42 U.S.C. 289g(b)). (b) For purposes of this section, the term ‘‘human embryo or embryos’’ includes any organism, not protected as a human subject under 45 CFR 46 as of the date of the enactment of this Act, that is derived by fertilization, parthenogenesis, cloning, or any other means from one or more human gametes or human diploid cells. Guess he should have READ the “Omnibus Appropriations Act, 2009 before signing it into law... I followed the link on http://www.whitehouse.gov/the_press_office/ FY2009OmnibusAppropriationsActPu blicReview/ to see if it was true, sure enough, it's in there http://appropriations.house.gov/pdf/2009_Con_Bill_DivF.pdf If you want to read it yourself, pg 128, lines 9 - 24. there are 2 pages inserted so it is page 130 of the pdf. At 05:25 PM 3/25/2009, Lawrence King wrote: whether you consider them blastocysts or babies, the couples who conceived them have already made the decision that they will never be born and have a meaningful purpose outside the petri dish. I truly believe the parents should have the right to decide the fate regarding the use of their unused fertilized egg's stem cells as well. Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] For you MSr's
- From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Friday, February 27, 2009 9:21 PM Subject: Re: [TMIC] For you MSr's Thanks Linda, and you too Jill for bringing up the subject! I don't post very often but I've been following the group off and on for more than a year and a half and the advice I've gotten from everyone about meds. has literally saved my life. I never lost mobility, can still skip and run if I have to. My balance sucks and I use a cane from time to time but no-one could see my pain or have any Idea what I was (and still am) going through! sometime I would corner friends and acquaintances and pour out my story. I would even take their hand and tip my head down in hopes that the shock would jump from my hand to theirs so that they would feel a bit of what I was going through and know that I wasn't some flake case. after 6 months of this pain I was ready to jump off a cliff like the unfortunate herd of pigs who receive the legion of demons Jesus encounters possessing the mad man outside of the city of Gadarenes. But I did not want to hurt my husband and children. This Sunday is my 2 year anniversary of TM and I don't want to jump off a cliff anymore but I still trying to come to terms with it all, I've come a long way but my husband is still a bit baffled by the changes in me. he has reaffirmed his commitment to me and our marriage of 22 years but he has a long way to go when it comes to understanding the remaining me and the new parts that have been shaped by this invisible pain. I figure that medical researchers have until my 8 year old turns 22 to come up with effective central pain syndrome treatment or cure... and yes Icontinue to pray for it to go away. the shocks don't bother me as much as the 24/7 buzz... I hope we all find it gone someday! Mindy the Artist On Feb 27, 2009, at 9:31 PM, L T CHERPESKI wrote: I have that too, Mindy - not 24/7 though. My lesions are high up like yours, C4,5 6 and I get the shocks down both arms and hands, and when I bend my head I get them from the right side of my neck up the right side only of my head. That's a real special one. Jill, I don't have MS either. I think with these crazy diseases there are many symptoms that are similar. Does that ever go away??? That would be nice, but I've had TM almost 7 years now and I still have these symptoms. I'm sure many people do not have them anymore - and I hope yours go away! Linda - Eagle, ID Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Thursday, February 26, 2009 10:36 PM Subject: Re: [TMIC] For you MSr's I have L'hermettes sign on top of the sensation that I have my finger stuck in a light socket 24/7. Imagine that, electrocution with electric bursts... but I don't have MS. Mindy the Artist TM March 1, 2007 C4-C5 On Feb 26, 2009, at 10:47 PM, Jill Z wrote: I know some of us TMr's turned into MSr's and I was just wondering have any of you experienced that Lhermette's sign when you bend your neck forward and get electric down your legs? And does that ever go away??? Thanks, Jill in Chicago TM '04 MS '09 :( Windows Live™ Contacts: Organize your contact list. Check it out. = A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
[TMIC] anniversary
today is my 2 year anniversary of contracting TM. Mindy the Artist
Re: [TMIC] For you MSr's
Hi Cindy, I'm in S. E. Ohio, and thanks for the suggestion- I will think about it. His hangups about sick people are rather complex, his Father just died 2 months ago and he was a military eye doctor who had a hero complex and a drinking problem. He established eye clinics, saved the vision of the poor and trained doctors in Ethiopia, Egypt, India , Vietnam, Bangladesh and last fall he escaped out the back door of a hospital in Afghanistan while the front entrance and windows were being shot out by insurgents... and he was 80 years old at the time. He also wrecked 2 marriages and traumatized 5 children with his drinking. So... my husband has a lot on his own plate right now and needs my love, patience, and support right now as much as I need his. I just wish I could have a life coach right now, I am physically capable of doing the things I did before but my mind can't seem to organize my day in a productive way. that's what my husband is having trouble understanding. Mindy the Artist On Feb 28, 2009, at 1:45 AM, Cindy McLeroy wrote: Mindy, I forget where you are from, but if you could find a TM or maybe even a MS support group and take your husband with you, he might have some hah ha moments. I run a support group in So CA and so many people bring someone close to them that doesn't quite get it. When they hear others describe the things the TM'er has described it is as if a light goes off and a new kind of sensitivity sets in. Let me know where you are from and maybe I can help you find a group near by. Take care, Cindy McLeroy - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Friday, February 27, 2009 9:21 PM Subject: Re: [TMIC] For you MSr's Thanks Linda, and you too Jill for bringing up the subject! I don't post very often but I've been following the group off and on for more than a year and a half and the advice I've gotten from everyone about meds. has literally saved my life. I never lost mobility, can still skip and run if I have to. My balance sucks and I use a cane from time to time but no-one could see my pain or have any Idea what I was (and still am) going through! sometime I would corner friends and acquaintances and pour out my story. I would even take their hand and tip my head down in hopes that the shock would jump from my hand to theirs so that they would feel a bit of what I was going through and know that I wasn't some flake case. after 6 months of this pain I was ready to jump off a cliff like the unfortunate herd of pigs who receive the legion of demons Jesus encounters possessing the mad man outside of the city of Gadarenes. But I did not want to hurt my husband and children. This Sunday is my 2 year anniversary of TM and I don't want to jump off a cliff anymore but I still trying to come to terms with it all, I've come a long way but my husband is still a bit baffled by the changes in me. he has reaffirmed his commitment to me and our marriage of 22 years but he has a long way to go when it comes to understanding the remaining me and the new parts that have been shaped by this invisible pain. I figure that medical researchers have until my 8 year old turns 22 to come up with effective central pain syndrome treatment or cure... and yes Icontinue to pray for it to go away. the shocks don't bother me as much as the 24/7 buzz... I hope we all find it gone someday! Mindy the Artist On Feb 27, 2009, at 9:31 PM, L T CHERPESKI wrote: I have that too, Mindy - not 24/7 though. My lesions are high up like yours, C4,5 6 and I get the shocks down both arms and hands, and when I bend my head I get them from the right side of my neck up the right side only of my head. That's a real special one. Jill, I don't have MS either. I think with these crazy diseases there are many symptoms that are similar. Does that ever go away??? That would be nice, but I've had TM almost 7 years now and I still have these symptoms. I'm sure many people do not have them anymore - and I hope yours go away! Linda - Eagle, ID Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Thursday, February 26, 2009 10:36 PM Subject: Re: [TMIC] For you MSr's I have L'hermettes sign on top of the sensation that I have my finger stuck in a light socket 24/7. Imagine that, electrocution with electric bursts... but I don't have MS. Mindy the Artist TM March 1, 2007 C4-C5 On Feb 26, 2009, at 10:47 PM, Jill Z wrote: I know some of us TMr's turned into MSr's and I was just wondering have any of you experienced that Lhermette's sign when you bend your neck forward and get electric down your legs? And does that ever go away??? Thanks, Jill in Chicago TM '04 MS '09 :(
Re: [TMIC] For you MSr's
Thanks Jan, I don't dump my medical history on the unsuspecting anymore either. my 14 year old daughter can read me but she's still at that stage where she hates doing chores and hasn't figured how picking up or doing a few dishes could help mom out on bad days and relieve some of the stress disorganization has on the whole family. Being an introvert I disappear from the group from time to time, this level of communication is hard for me to maintain but I know that you all are here for me as my physical mental and spiritual issues need to be addressed. I just wish we would adopt an AA or Al-Anon 12 step approach to talking about our religious or spiritual beliefs. We all have souls whether we are fundamentalists or atheists and the bickering that breaks out from time to time over semantics and drives away valuable contributers is a real bummer! In Al-Anon I've seen groups that included christians, a hindu and several non- believers help each other and talk about the issues of the soul without offending each other. we should be able to do that to as we cannot truly help each other in all aspects of healing and coping with this disease unless we address all three: physical, mental and spiritual. just my thoughts on the matter. On Feb 28, 2009, at 12:49 PM, Jan Hargrove wrote: Mindy the Artist Mindy et al, The only people who understand how we feel or what we are dealing with, are those who have what we have!! I have a wonderful caretaker in my hubby, and he comes close to understanding but there is no way to let him know the constant pain with which I deal daily!!! That said, I don't try to tell people what's going on with my bodythey don't understand, never will, so I just go about life as if everything is great! and only tell what kind of day I'm having if they ask. Course, I've family and some close friends who can read how I'm dealing on any given day, and they treat me accordingly and don't ask! Being one of the walking, having progressed from being a complete to the t8, folks look at me and think I'm well now and why burst their bubble, course there are times when I can't do and then I stay home. I would never have asked to spend the last 12 years and 10 months with tm, but I have and I don't think that dwelling on it serves any purpose, I never asked why me because who can explain God's plan for me. Just know that we know where you're coming from and if you need to scream to release some pain or frustration, scream at us, we've all been there!! As for answers, we can only answer those questions that we have dealt with personally, but ask and someone will recognize your symptoms and give you their best answer. Hugs. janh
Re: [TMIC] For you MSr's
Thanks Linda, and you too Jill for bringing up the subject! I don't post very often but I've been following the group off and on for more than a year and a half and the advice I've gotten from everyone about meds. has literally saved my life. I never lost mobility, can still skip and run if I have to. My balance sucks and I use a cane from time to time but no-one could see my pain or have any Idea what I was (and still am) going through! sometime I would corner friends and acquaintances and pour out my story. I would even take their hand and tip my head down in hopes that the shock would jump from my hand to theirs so that they would feel a bit of what I was going through and know that I wasn't some flake case. after 6 months of this pain I was ready to jump off a cliff like the unfortunate herd of pigs who receive the legion of demons Jesus encounters possessing the mad man outside of the city of Gadarenes. But I did not want to hurt my husband and children. This Sunday is my 2 year anniversary of TM and I don't want to jump off a cliff anymore but I still trying to come to terms with it all, I've come a long way but my husband is still a bit baffled by the changes in me. he has reaffirmed his commitment to me and our marriage of 22 years but he has a long way to go when it comes to understanding the remaining me and the new parts that have been shaped by this invisible pain. I figure that medical researchers have until my 8 year old turns 22 to come up with effective central pain syndrome treatment or cure... and yes I continue to pray for it to go away. the shocks don't bother me as much as the 24/7 buzz... I hope we all find it gone someday! Mindy the Artist On Feb 27, 2009, at 9:31 PM, L T CHERPESKI wrote: I have that too, Mindy - not 24/7 though. My lesions are high up like yours, C4,5 6 and I get the shocks down both arms and hands, and when I bend my head I get them from the right side of my neck up the right side only of my head. That's a real special one. Jill, I don't have MS either. I think with these crazy diseases there are many symptoms that are similar. Does that ever go away??? That would be nice, but I've had TM almost 7 years now and I still have these symptoms. I'm sure many people do not have them anymore - and I hope yours go away! Linda - Eagle, ID Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Thursday, February 26, 2009 10:36 PM Subject: Re: [TMIC] For you MSr's I have L'hermettes sign on top of the sensation that I have my finger stuck in a light socket 24/7. Imagine that, electrocution with electric bursts... but I don't have MS. Mindy the Artist TM March 1, 2007 C4-C5 On Feb 26, 2009, at 10:47 PM, Jill Z wrote: I know some of us TMr's turned into MSr's and I was just wondering have any of you experienced that Lhermette's sign when you bend your neck forward and get electric down your legs? And does that ever go away??? Thanks, Jill in Chicago TM '04 MS '09 :(
Re: [TMIC] For you MSr's
I have L'hermettes sign on top of the sensation that I have my finger stuck in a light socket 24/7. Imagine that, electrocution with electric bursts... but I don't have MS. Mindy the Artist TM March 1, 2007 C4-C5 On Feb 26, 2009, at 10:47 PM, Jill Z wrote: I know some of us TMr's turned into MSr's and I was just wondering have any of you experienced that Lhermette's sign when you bend your neck forward and get electric down your legs? And does that ever go away??? Thanks, Jill in Chicago TM '04 MS '09 :(
Re: [TMIC] Lyrica
I never tried Neurontin, opting for lyrica first and yes I had a headache for 4-5 days and then it subsided, balance was also messed up for a while. really took 2 weeks for the full benefit and the addition of Amantadine to counter the sleepiness but in combination with cymbalta gave me my life back! Mindy the Artist On Jan 25, 2009, at 7:44 AM, Regina Rummel wrote: My neuro now tells me that my symptoms are caused by much more than TM. Namely vasculatis. She put me on Lyrica and I woke up this AM with a pretty nasty headache. Should I put up with this and it will pass? What were your problems or successes with Lyrica? R
Re: [TMIC] OT smiles
Cute it's not just cute! it made my day! Mindy the Artist On Jan 24, 2009, at 3:31 PM, Todd Tarno wrote: This is a 16 mins movie, that is cute. http://budurl. com/SmilesYouTub e --- On Thu, 1/22/09, TODD TARNO toddnbi...@sbcglobal.net wrote: From: TODD TARNO toddnbi...@sbcglobal.net Subject: Fwd: Fw: smiles To: Duane Aubert dauber...@hotmail.com, Joyce Carson jycath...@yahoo.com, Ira Duval idu...@austin.rr.com, David Graham grahamcracker1...@yahoo.com, Ricky Hayes rhayes...@yahoo.com, Debbie Jones jonesdebbi...@yahoo.com, Willy Angel Kelly zacharyb...@sbcglobal.net, Marleen Kennison mkenni2...@aol.com, Kristi Mohler kristi2...@hotmail.com Date: Thursday, January 22, 2009, 3:38 PM http://budurl. com/SmilesYouTub e --- On Wed, 1/21/09, April Sadler aprilli...@gmail.com wrote: From: April Sadler aprilli...@gmail.com Subject: Fwd: Fw: smiles To: Andra Goodman andra.good...@gmail.com, Patrick Healy tricky...@gmail.com, tat...@aol.com tat...@aol.com, Angel Parker thedalscw...@hotmail.com, Kate Gahan gahanor...@gmail.com, kimberly billy caylor...@hotmail.com, janelle ligarde schulze nellieschu...@gmail.com, Jeff Mirabelle je...@elitefinancinggroup.com, Jody Kane jodywi...@yahoo.com, judybeth graceb...@aol.com, JENNIFER NICHOLS nichols...@sbcglobal.net, gia gulino giagul...@hotmail.com, CJ Schimmels shylos...@gmail.com, Daymon Sadler laughd...@aol.com, lena sacco mrslsa...@yahoo.com, sharon gallagher sh...@earthlink.net, stanley pearson sp...@hotmail.com, tina cisneros splite...@hotmail.com, TODD TARNO toddnbi...@sbcglobal.net, Trevor Hickle tre...@folkadelic.com, gwendyliongr...@aol.com, robin hunter c_robinh...@yahoo.com, celeste sadler csadler...@aol.com, Carrie Williams carriewilliams...@yahoo.com, Francine Franklin frans...@gmail.com, Eric Franklin franklin.e...@gmail.com, Kevin Schell ksch...@yahoo.com, lu...@onedragon.com, Terry Lewis gotmyb...@gmail.com Date: Wednesday, January 21, 2009, 6:49 AM good morning everyone this video is long but worth every minute much love April http://budurl. com/SmilesYouTub e
Re: [TMIC] OT... Been there, saw the potties!
I just returned from the mall, Crawled under the stage used in yesterdays concert to visit the Lincoln Memorial a few days ago after seeing my father in law buried at Arlington National Cemetery. I am back home in Ohio but I almost wish we could have stayed. I have been visiting the D.C. area for 25 years and this is the first time I recall the residents polite, helpful and friendly. I am walking wounded and 5 days of viewings, funeral, and then site seeing in frigid temperatures proved to me what I am still made of inspite of CPS from the chest down. And Frank, I'm guessing folks will be in and out in 2 minutes... who wants to pee in a refrigerator!! Mindy On Jan 14, 2009, at 4:54 PM, fr...@franksheldon.com wrote: Dear Gang, Well, As you know, I received my invitation from the Inaugural Committee a while ago, then I learned about the numbers: Approx.. 2,000,000 people Approx.. 5,000 porta potties Therefore: 400 people to one potty The average visitation to a potty takes 4 minutes Therefore: 1600 minutes for everyone to go once So 1600 minutes divided by 60 minutes in an hour: 26.6 hours for everyone to visit once. I don't think I'm going Frank
Re: [TMIC] Re: tmic-digest Digest V2009 #3
My Deepest sympathies Rick, I also lost a family member- my father- in-law December 20th. Mindy the Artist On Jan 4, 2009, at 12:46 AM, ashfo...@att.net wrote: Dear Friends, This is Rick, I hope you all a Happy New Year,sad to say and believe but I lost my oldest son to a car wreck on new years eve. I hope you will remember him in your prayers tonight Besides us he left two young daughters, Stephine an Shelby His name is Jeffery Lynn Hughey. Age 45 What a waist. Thank You Rick -- Original message from tmic-digest- requ...@eskimo.com: -- Happy Birthday to all you January kids. I wish the best for all of you. Patti in Wisconsin From: jharpe...@aol.com [mailto:jharpe...@aol.com] Sent: Thursday, January 01, 2009 11:42 PM To: tmic-list@eskimo.com Subject: [TMIC] January birthdays Happy Birthday to the January kids! Happy Birthday and Happy New Year! Please send any additions or corrections to tmic-l...@eskimo.com. 1- 7 Lauren (sugal...@adelphia.net) 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1/9 Julienne (julesin...@aol.com) 1/13 Debi (brade...@hotmail.com) 1-17 Jenna Stentz (jkste...@yahoo.com ) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday snow121...@hotmail.com 1/23 Patti Dotson (ll...@aol.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com) 1/30 Cora (ceckenb...@wildblue.net) New year...new news. Be the first to know what is making headlines.
Re: [TMIC] Hello i need your urgent assistance..
Like any of us with our medical and prescription costs have roughly $2000 to spare! (throw away!!) Mindy the Artist On Dec 5, 2008, at 3:18 PM, robert hennessy wrote: Hello, Sorry I didn't inform you about my traveling to UK for a program, am presently in London and i am stranded here because i misplaced my wallet on my way to the hotel where my money and other valuable things were kept.I will like you to assist me with a soft loan urgently with the sum of 1,850 GB Pounds to sort-out my hotel bills and get myself back home. I will appreciate whatever you can afford, i will pay back as soon as i return.So please use the details below to transfer the money to me through Western Union money transfer because i was told that is the only way i could be able to get it fast and leave. This is the detail below Name : Robert Hennessy Address:Kenilworth Road, Hampton-in-Arden Solihull, West Midlands B92 0LW Country :England Test Question :Year of birth? Answer : 1981 Amount Sent: ? kindly help me to make the transfer as soon as you receive this email and once you have it sent, send me the money transfer control number with details used in sending it. Also i have my passport to prove my identity at Western union here when receiving the money. Hope to hear from you soon. Suspicious message? There’s an alert for that. Get your Hotmail® account now.
Re: [TMIC] House
Yes Grace, you're our own celebrity! we'll keep your 15 minutes of fame going for quite a while. Hope you're doing better! Mindy the Artist On Dec 3, 2008, at 7:11 PM, Grace M. wrote: Hi Patti, Marieke and Heather are right. That was me on the Discovery Channel. Recurrent LETM (Longitudinal Extensive Transverse Myelitis) is one of the symptoms of Devic's. It's pretty wicked. Gracie
Re: [TMIC] Too Cold
I don't have the temp. control issue but I wonder if taking capsaicin capsules might help those who do warm up from the inside I understand you need to build up your dosage if you try it. Mindy the Artist On Nov 29, 2008, at 11:05 AM, Jan Hargrove wrote: Jude, Temperature control is the only thing that my doc said would not return!... that said, I have found that silk underwear is the best thing to help.Silk is nice to your skin and light weight, so you need fewer heavy blankets!! I get my silks from Winter Silks, which has a 20% off sale right now. The web site is: www.wintersilks.com Hope this helps! Hugs, janh in OK --- On Sat, 11/29/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: Hi All, Is anyone else out there suffering from that bone-chilling cold that settles deeply into your bones and nothing you do helps to warm you up? I began to get cold earlier in the evening and have had Dave put mega blankets on me until they are so heavy I can barely lift them. I now have a queen sized silk blanket doubled on top of all of my other covers on my small hospital bed. This kind of cold came with the Transverse Myelitis and I don't believe it will ever go away. At least there is no kind of medication to warm me up that I know of. Does anyone out there have a clue? I know that some of you have also felt this chilling cold. What do you do to combat it? It is ridiculous the lengths I go to in order to be able to sleep, but am so uncomfortable that I can't. At least I am tired enough to give it a go... Jude Life should be easier. So should your homepage. Try the NEW AOL.com.
Re: [TMIC] Devics NMO Relapse.
Grace, my thoughts and prayers are with you. I have witnessed how you have been instrumental in helping others in their affliction and wish the same could happen for you. you are one of my hero's on this list! Mindy the Artist On Nov 26, 2008, at 12:08 PM, Grace M. wrote: Sorry for being out of touch, but have relapsed. It is my vision this time. We did an emergency chemo and three days of IV SoluMedrol and I'll be repeating chemo on Devcember 8th. My vision has not improved much, and I am very disheartened. I just had an MRI of the cord, brainstem and brain, about three months ago and everything was stable---so, this really hit me out of the blue. Why couldn't it have been simple MS? Why this? We have recently had several deaths among our Devic's Advocacy members and have several more that are in terrible shape. My heart just can't cope with it anymore. I HATE this. Grace
[TMIC] OHIO
3 things I have learned never to discuss with other people: politics, religion, and the great pumpkin Linus I'm in Athens, Ohio and I've been told there is another TM survivor in town but my PT wouldn't give me his contact info and I don't know if she ever gave him mine. I was told he experienced nearly full recovery so I imagine he may not have felt it important to talk to me. Mindy the Artist On Oct 28, 2008, at 6:54 PM, kevin weilacher wrote: Hi Ella in Ohio...may I ask where in Ohio...? My name is Kevin and I'm in Canton, Ohio. Hi neighbor From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tuesday, October 28, 2008 5:24:42 PM Subject: Re: [TMIC] Test - can't seem to get on I got it okay here Ella in Ohio Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!
Re: [TMIC] OHIO
The first time I subscribed was in July 4, 2007 I seem to keep dropping off the list, I can post for a while and then I get refused. I subscribed again 4 days ago and had trouble posting last night. Am I missing something here? On Oct 29, 2008, at 11:48 AM, Deborah Nord Capen wrote: Hello Lawrence, Have you joined the TMA? If you do so, you will receive the Membership Directory and find people in your area. There is one member in Canton, Ohio. Also, the Ohio TMA support group is very active and holds many periodic support group meetings. Once you are signed up, the support group leader will contact you and give you the information. Or, you can go to the website at www.myelitis.org and look up support groups, and find the contact name in the Ohio support group link. Hope this helps. Take care, Debbie - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Wednesday, October 29, 2008 6:22 AM Subject: [TMIC] OHIO 3 things I have learned never to discuss with other people: politics, religion, and the great pumpkin Linus I'm in Athens, Ohio and I've been told there is another TM survivor in town but my PT wouldn't give me his contact info and I don't know if she ever gave him mine. I was told he experienced nearly full recovery so I imagine he may not have felt it important to talk to me. Mindy the Artist On Oct 28, 2008, at 6:54 PM, kevin weilacher wrote: Hi Ella in Ohio...may I ask where in Ohio...? My name is Kevin and I'm in Canton, Ohio. Hi neighbor From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tuesday, October 28, 2008 5:24:42 PM Subject: Re: [TMIC] Test - can't seem to get on I got it okay here Ella in Ohio Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!
Re: [TMIC] Guidelines
The guidelines need to include political messages We are one group united by our common factor TM. but when a member spouts political rhetoric we are divided into the right and the left. There are tons of groups devoted to this type of political banter but only one for TM sufferers! I happen to be very politically active (even volunteering for my party) but I respect the rights of my fellow TM family members to have their Own Opinion politically, I respect that they were not born yesterday, have a lifetime of experiences shaping their views and have a sovereign right to their opinions! keep politics out of this one please! Mindy the Artist On Oct 24, 2008, at 8:51 AM, [EMAIL PROTECTED] wrote: Just a reminder of the TMIC Guidelines on the TMIC site at http:// www.myelitis.org/tmic/#guidelines: Please keep messages plain text. Do not post personal information that you don't want the world knowing. The message archive is searchable by anyone with Internet access. Please do not use excessive quoting when replying to a message. Please do not use graphics in messages. Please do not forward or post long jokes or fictional stories. Please do not forward virus warning unless you have verified it to be true and not a hoax. Check these sites: In a message dated 10/24/2008 7:59:38 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Subject: Fw: New Company Policy Notice to All Employees As of November 5, 2008, when President Obama is officially elected into office, our company will instill a few new policies which are in keeping with his new, inspiring issues of change and fairness: 1. All salespeople will be pooling their sales and bonuses into a common pool that will be divided equally between all of you. This will serve to give those of you who are underachieving a fair shake. 2. All low level workers will be pooling their wages, including overtime, into a common pool, dividing it equally amongst yourselves. This will help those who are too busy for overtime to reap the rewards from those who have more spare time and can work extra hours. 3. All top management will now be referred to as the government. We will not participate in this pool ing experience because the law doesn't apply to us. 4. The government will give eloquent speeches to all employees every week, encouraging it's workers to continue to work hard for the good of all.=E 2 5. The employees will be thrilled with these new policies because it's good to spread the wealth. Those of you who have underachieved will finally get an opportunity; those of you who have worked hard and had success will feel more patriotic. 6. The last few people who were hired should clean out their desks. Don't feel bad, though, because President Obama will give you free healthcare, free handouts, free oil for heating your home, free food stamps, and he'll let you stay in your home for as long as you want even if you can't pay your mortgage. If you appeal directly to our democratic congress, you might even get a free flat screen TV and a coupon for free haircuts (shouldn't all Americans be entitled to nice looking hair?) !!! If for any reason you are not happy with the new policies, you may want to rethink your vote on November 4th. Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out! Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!
Re: [TMIC] Guidelines
I would have to disagree. I have yet to see a political post that was strictly informational and documentable that compared without bias, each candidates stand on TM and its survivors. (The issue of abortion is not going to heal my spinal cord!) The only political posts I want to see here are ones regarding health based legislation which will directly help TM survivors that I can then encourage my Congressmen, Senators and president to support! Mindy the Artist On Oct 24, 2008, at 12:16 PM, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: I would agree that it is not of benefit for those looking for advice, support, etc. from fellow TM'ers to hear one-sided advertisements or promotional materials from supporters of political candidates. However, keep in mind that it is of benefit to be informed of such a candidate who, although physically fit himself (as stated today by Frank) is, from my understanding, a documented pro-abortionist whose position reveals a lack of sympathy for the weak in which category we with TM could be placed. In fact, this may not turn out to be only a lack of sympathy by rather a pro-active stance which could and most likely would lead to an attitude which considers the elderly or sickly a detriment to the economy or society in general. Therefore, the very nature of this list should call for warnings, or at least information, about certain ones seeking office who will have an influence on our well-being as pertaining to TM. Again, though, I agree we should not have to listen to (read) other general political opinions, warnings, etc, when our main attention should be on TM and closely related topics. Gary in Michigan - Original Message - From: kevin weilacher To: Lawrence King ; tmic-list@eskimo.com Cc: Lawrence King Sent: Friday, October 24, 2008 11:26 AM Subject: Re: [TMIC] Guidelines How eloquently put.. I totally agree...this IS NOT the proper forum for political views. From: Lawrence King [EMAIL PROTECTED] To: tmic-list@eskimo.com Cc: Lawrence King [EMAIL PROTECTED] Sent: Friday, October 24, 2008 11:16:02 AM Subject: Re: [TMIC] Guidelines The guidelines need to include political messages We are one group united by our common factor TM. but when a member spouts political rhetoric we are divided into the right and the left. There are tons of groups devoted to this type of political banter but only one for TM sufferers! I happen to be very politically active (even volunteering for my party) but I respect the rights of my fellow TM family members to have their Own Opinion politically, I respect that they were not born yesterday, have a lifetime of experiences shaping their views and have a sovereign right to their opinions! keep politics out of this one please! Mindy the Artist On Oct 24, 2008, at 8:51 AM, [EMAIL PROTECTED] wrote: Just a reminder of the TMIC Guidelines on the TMIC site at http:// www.myelitis.org/tmic/#guidelines: Please keep messages plain text. Do not post personal information that you don't want the world knowing. The message archive is searchable by anyone with Internet access. Please do not use excessive quoting when replying to a message. Please do not use graphics in messages. Please do not forward or post long jokes or fictional stories. Please do not forward virus warning unless you have verified it to be true and not a hoax. Check these sites: In a message dated 10/24/2008 7:59:38 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Subject: Fw: New Company Policy Notice to All Employees As of November 5, 2008, when President Obama is officially elected into office, our company will instill a few new policies which are in keeping with his new, inspiring issues of change and fairness: 1. All salespeople will be pooling their sales and bonuses into a common pool that will be divided equally between all of you. This will serve to give those of you who are underachieving a fair shake. 2. All low level workers will be pooling their wages, including overtime, into a common pool, dividing it equally amongst yourselves. This will help those who are too busy for overtime to reap the rewards from those who have more spare time and can work extra hours. 3. All top management will now be referred to as the government. We will not participate in this pool ing experience because the law doesn't apply to us. 4. The government will give eloquent speeches to all employees every week, encouraging it's workers to continue to work hard for the good of all.=E 2 5. The employees will be thrilled with these new policies because it's good to spread the wealth. Those of you who have underachieved will finally get an opportunity; those of you who have worked hard and had success will feel more patriotic. 6. The last few people who were hired should clean out their desks. Don't feel bad
[TMIC] Testing 123
testing 123, is the group getting this? I am having trouble posting. Mindy the Artist
Re: [TMIC] Questions
1. yes. 40 years ago, got TM 1 year ago 2. no 3. no But my Husband had chicken Pox and shingles and a second flare-up of shingles around my one year TM anniversary, but I suppose none of that counts! Mindy the Artist On Apr 19, 2008, at 1:31 PM, jrushton wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Need a little help (all)
Welcome back Jude! Our pastor Invites anyone with prayer concerns to kneel at the prayer rail during the pastoral and Lords prayer every Sunday. I have always been shy about doing this but I have missed your words of wisdom and out of concern for your treatment and well being I decided to go to the altar and pray for you every sunday until there was a dramatic change in your situation. While kneeling at the rail this past sunday I realized that I should be praying for your caretakers that they might have a change of heart. BOY, talk about answered prayer! Our God is an awesome God! Mindy the Artist On Apr 9, 2008, at 7:03 PM, judith hoops wrote: The higher the lesion, the more dysfunction in the body. Then one needs to factor in whether one is an incomplete or complete para. Ask your Doctor to explain. Best of Love, Peace and Prayers, Jude - Forwarded Message From: Heather Pieter [EMAIL PROTECTED] To: Robert Pall [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, April 9, 2008 5:06:35 PM Subject: Re: [TMIC] Need a little help Robert, Not sure if higher is better or worse. It just tells what parts of the body are affected. I think it also depends on how much initial damage is done by the inflammation as to how you are affected by the residual effects. My lesion was at T8 - T10. I am one of the walking wounded. Usually walk unaided in house but use cane if I am tired or under the weather. Use cane or walker outside of home. Wheelchair once in a while. Heather in Calgary - Original Message - From Sent: Wednesday, April 09, 2008 2:45 PM Subject: [TMIC] Need a little help Just rec'd results of MRI (thorasic) and they show the lesions in the T8-T12 region. Even though I have had this condtion for more than 10 years I have never known my T score..is a higher # on the T scale better or worse? Thx Rob in New Jersey No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.10/1367 - Release Date: 4/9/2008 7:10 AM mime-attachment Mindy King www.chairweaver.com (740) 662-2001
Re: [TMIC] URINARY TRACT INFECTIONS SPREAD FROM AN UNLIKELY SOURCE for all)
You can find the very same tests your doctor uses at your local drug store. they are on the shelf and not behind the counter. Mindy the ArtistOn Apr 7, 2008, at 8:59 PM, Trudy OGILVIE wrote: I was wondering if anyone knows of a Home kit that could tell you if you have a UTI. Since the only feeling I have in that area is pain I cannot tell if I have an infection. On my last yearly checkup it was discovered that I did had an infection. I don't want to have to make an appointment then go take the test but I would like to check every few months if I have an infection. Thanks! And thank you for the info on the dogs! We foster dogs so I will now make sure I wash EVERY time they come in from the outside. Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: [EMAIL PROTECTED] Date: Mon, 7 Apr 2008 18:26:51 -0400 To: tmic-list@eskimo.com Subject: [TMIC] URINARY TRACT INFECTIONS SPREAD FROM AN UNLIKELY SOURCE UTI's ~ A new study has found that you could be exposed to E. coli viruses in the home that are carried by your pet. Minneapolis researchers have discovered that it's extremely common for humans and pets to share the E. coli that causes urinary tract infections. So, the next time you give ol' Rover a well-deserved pat on the head, you would do well to remember that cleanliness is next to healthiness. As always, the best way to avoid sickness and viruses of all sorts is to regularly wash your hands. You don't need anti- bacterial wipes or any other germ fighters – just simple warm soap and water. Sure, your dog is part of the family, and of course he's cute and cuddly – but he's also an animal who's probably rooting about in the yard and exposing himself to all kinds of things. So it's best to wash your hands as often as possible whenever you've touched your pet, and be sure that you keep your house clean as well. Planning your summer road trip? Check out AOL Travel Guides _ More immediate than e-mail? Get instant access with Windows Live Messenger. http://www.windowslive.com/messenger/overview.html? ocid=TXT_TAGLM_WL_Refresh_instantaccess_042008
Re: [TMIC] URINARY TRACT INFECTIONS SPREAD FROM AN UNLIKELY SOURCE for all)
I should say the test is called AZO test strips and they sell in a box of 3 for around $10. Also I'm not usually into herbal cures but Bearberry, also known as Uva Ursi really works for mild cases. 2 capsules 3 x a day for 4 to 7 days and then stop as this should not be used for longer than a week and you want to keep urine alkaline rather than acidic so avoid cranberry, citrus and vitamin C supplements during treatment Mindy King www.chairweaver.com (740) 662-2001 On Apr 7, 2008, at 11:16 PM, Lawrence King wrote: You can find the very same tests your doctor uses at your local drug store. they are on the shelf and not behind the counter. Mindy the ArtistOn Apr 7, 2008, at 8:59 PM, Trudy OGILVIE wrote: I was wondering if anyone knows of a Home kit that could tell you if you have a UTI. Since the only feeling I have in that area is pain I cannot tell if I have an infection. On my last yearly checkup it was discovered that I did had an infection. I don't want to have to make an appointment then go take the test but I would like to check every few months if I have an infection. Thanks! And thank you for the info on the dogs! We foster dogs so I will now make sure I wash EVERY time they come in from the outside. Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: [EMAIL PROTECTED] Date: Mon, 7 Apr 2008 18:26:51 -0400 To: tmic-list@eskimo.com Subject: [TMIC] URINARY TRACT INFECTIONS SPREAD FROM AN UNLIKELY SOURCE UTI's ~ A new study has found that you could be exposed to E. coli viruses in the home that are carried by your pet. Minneapolis researchers have discovered that it's extremely common for humans and pets to share the E. coli that causes urinary tract infections. So, the next time you give ol' Rover a well-deserved pat on the head, you would do well to remember that cleanliness is next to healthiness. As always, the best way to avoid sickness and viruses of all sorts is to regularly wash your hands. You don't need anti- bacterial wipes or any other germ fighters – just simple warm soap and water. Sure, your dog is part of the family, and of course he's cute and cuddly – but he's also an animal who's probably rooting about in the yard and exposing himself to all kinds of things. So it's best to wash your hands as often as possible whenever you've touched your pet, and be sure that you keep your house clean as well. Planning your summer road trip? Check out AOL Travel Guides _ More immediate than e-mail? Get instant access with Windows Live Messenger. http://www.windowslive.com/messenger/overview.html? ocid=TXT_TAGLM_WL_Refresh_instantaccess_042008
Re: [TMIC] This Is a Test (for all)
welcome back Naomi! I have just survived my one year TM anniversary. I am also C4-C5 but my damage is only central neuropathy syndrome. Everything still works but I feel as though I am being electrocuted from the chest down 24/7 what a strange disease this is!!! Mindy the artist On Mar 31, 2008, at 10:12 PM, [EMAIL PROTECTED] wrote: I have been kicked off the list, and I judging from the archives, it has been a great while. I hope this message makes it through. Naomi C4-incomplete, quadriplegic since July 2005 due to Transverse Myelitis Create a Home Theater Like the Pros. Watch the video on AOL Home.
Re: [TMIC] This Is a Test (for all)
Naomi, I wouldn't call it a happy anniversary but I've decided it's still good to be alive. There is some question as to whether I can call my sensations Central Pain Syndrome or not because I don't have the three forms of pain defined, which include things like intolerance to hot and cold and intolerance to touch. But I personally think the electrocution sensation is pretty agonizing and without a combination of lyrica and cymbalta I would be looking for a cliff to throw myself from in a short time. I even use voltage references to describe how I'm feeling to others and if they have never been zapped I recommend they lick the end of a new 9 volt battery to get an idea of my sensations. You call yourself incomplete does that mean you have some use of your body below the injury level? Mindy the Artist On Apr 1, 2008, at 12:00 AM, [EMAIL PROTECTED] wrote: Mindy, Happy one year anniversary! I've never heard of Central Neuropathy Syndrome. Electrocution is something I've always tried to steer clear of. I worked for my local electric company, installing electrical equipment for 25 years. I did not like getting those little zap then and I sure wouldn't like getting them now. Naomi C4-incomplete, quadriplegic since July 2005 due to Transverse Myelitis Create a Home Theater Like the Pros. Watch the video on AOL Home.
[TMIC] Jude's Hospital (for all)
I found this on Jude's hospitals web site: If you have a quality or patient safety concern, please contact your physician, nurse, nurse manager, or another member of your healthcare team who will work with you to resolve your concern. If you feel the issue is not resolved, call the Genesys Patient Care Representative at 810- 606-6551, I also looked up the hospital health care record at several sites and found it to be average quality in only a few areas but substandard in the rest. Every patient there deserves better! Mindy the Artist
[TMIC] on Jude's behalf (for all)
Michigan Department of Community Health Any person may file a complaint about a health facility with the Michigan Department of Community Health, Bureau of Health Systems, Division of Operations, Complaint Investigations Unit, P.O. Box 30664, Lansing, Michigan 48909. If you need assistance or wish to make an oral complaint, you may call The Department of Community Health at (800) 882-6006. Mindy the Artist
[TMIC] Jude's info
It's: Judy Hoops Room 4159 Genesys Health System One Genesys Parkway Grand Blanc, MI 48439 Mindy the Artist
Re: [TMIC] Unidentified subject! for all
Hi Steven, It's the one year anniversary of my TM attack and I was affected at C4-C5. I guess it would qualify as a semi acute attack as my symptoms developed slowly and I never lost mobility or even urinary/bowel control though it does take more effort these days, what I did develop was neuropathic pain from the chest down: feels like I'm being electrocuted 24/7. My pain has never improved and is not likely to and my balance is poor. To avoid burning sensation I have given up all soda and limit juice to a small cup a day. I find I can handle coffee if I drink a lot of water. I also take vitamin C at night to acidify the urine and reduce my chances of developing an infection. Hope this helps.. Mindy the Artist On Mar 2, 2008, at 9:31 PM, Larry Throne wrote: Welcome to the family Steven! You'll find a lot of love and understanding here. Where are you from? Maryland? From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Mon, 3 Mar 2008 00:06:18 + Subject: [TMIC] Unidentified subject! My name is Steven Jabs I am 34 years old. I have TM since 2003 I was affected from the chest down and lost my breathing. I was treated at John Hopkins by Dr. Kerr. I currently walk with a cane. I have bladder problems and allot of burning. I would like to talk to people who also have TM. [EMAIL PROTECTED] Mindy King www.chairweaver.com (740) 662-2001
Re: [TMIC] Merry Christmas!
God bless us everyone! Mindy the Artisan On Dec 25, 2007, at 7:30 PM, LifeIsJoy wrote: Me, three……..Cookie in Arizona From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, December 24, 2007 7:10 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Merry Christmas! Me, too! I wish you all a very special Christmas. Barbara H. http://barbarah.wordpress.com/ In a message dated 12/24/2007 6:25:10 PM Eastern Standard Time, [EMAIL PROTECTED] writes: I just wanted to say Merry Christmas to you and the ones you love! Larry in Oklahoma See AOL's top rated recipes and easy ways to stay in shape for winter.
[TMIC] TM and Blood pressure
Hey all, firstly, thanks all of you for the words of encouragement when I introduced myself and good news, my general practitioner has prescribed physical therapy for me! She said that it might make my Neuro unhappy and I laughed and said he dismissed me, remember! you've got carte blanche I carried in with me copies of your letters and read her a few bits. She is thrilled that I have found you and since she has never (and may never have another) had a TM patient before she is interested in your collective wisdom and experiences to treat me. So here's her first question: those of you who also have high blood pressure, what is your experience medication wise, what drugs worked with the least side effects and or drug interactions. I have to start the dash diet and will probably be put on some BP lowering drug within the month. Also should I think about antidepressants? life is really overwhelming right now! Mindy the Artisan
[TMIC] officially TM
Hi All, I have just been officially diagnosed with TM and my Neurologist has dismissed me as his patient. He does not expect my shivering sensation and Lhermitte’s sign to improve any further because I have passed the 6-month mark since the attack took place. I had hoped to talk him into some physical therapy even though I am walking wounded because I have found that walking any distance that would qualify as exercise causes acute pain. I’ve heard that swimming, stationary cycling or elliptical training could help restore some of my level of fitness but I don’t have the financial resources to pay for access to such equipment. His reason for excluding therapy was that he believed it would not help me recover from my forms of nerve pain. I am frustrated because as a result of TM I have lost my fitness, gained weight and am now experiencing borderline high blood pressure, a condition which could be reversed by losing 20 lbs and getting moving again (in a minimal impact fashion). I tried to see a pain specialist but when he found out what my causes and symptoms were he wouldn’t see me, said I should stick with my neuro for pain and my neuro is passing that responsibility off to my family practitioner. She is an excellent doctor and was my friend first before she became my physician (hate doing that cause it changes everything) but she still listens to me better than other doctors because she knows that I exist outside of her office and she knows what kind of person I am when I’m not sick. But this is her first venture into the world of TM. All the advice I got from the Neuro regarding my pain management was to tell my family doc. That she could triple my current dose of lyrica (75 mg 3 times a day) if needed but that I’d pay for the relief with medicine induced fatigue. My insurance does pay for the Lyrica and I’m sure they would pay for the High blood pressure meds but looks like my hope of getting a little subsidized fitness help is out of the question. Mindy the Artisan
Re: [TMIC] officially TM
Barb, Thank you for the hug! I have held up pretty well all day since the appointment but was just now about to break down in puddles i will share your letter with my PCP and since I have a few weeks to prepare for my next appointment a little research into what it takes to get therapy out of docs and insurance is in order! Your words of encouragement have really lifted my spirits Mindy the Artisan On Oct 1, 2007, at 11:14 PM, [EMAIL PROTECTED] wrote: Mindy, Your Neurologist is just wrong about not expecting to have any further improvement past the six months of onset, especially if you've already had improvement prior to that point. There are many of us who have gotten improvement at two years and past that. They may be small, but every bit is so important to us, and is so appreciated. It comes from hard work though, and that means therapy, in the centers and home as well. That doctor just isn't interested in treating you for some reason, which is very sad. Please tell your PCP (also friend) to look at the TMA website and she'll find some good information there about treating people with TM. I am not sure, but I would think that she should be able to refer you for PT if she is the doctor treating you. If there is a question with the insurance company, she should be able to answer anything they need, including the Neurologists unwillingness to continue treating you. I wish you good luck with this, but you have got to be your own advocate for this. Sometimes you just have to remain firm and make things happen for yourself or it just doesn't happen. Don't give up! Hugs, Barbara A See what's new at AOL.com and Make AOL Your Homepage.
[TMIC] Thanks!
Thanks Jude... and the other folks who have welcomed me into this community. I have been lurking and learning about how to cope with TM since July and I have to say you are an amazing group of people. I don't have much wisdom to offer (okay, I did email Frank about Hen3ry and Tom Lehrer as my husbands a fan and has the complete collection) but that's about it. and I haven't tipped over backwards in a wheelchair yet but if my sense of balance takes one more hit I'm gonna need a cane to avoid embarrassing encounters with lampposts and local officers (this college town has a real reputation for being a party school) I see my neuro Oct 1 and am trying to think of all the questions I could possibly write down to ask him about meds, treatments, recovery etc. Anybody have suggestions for my list? Mindy the artisan
[TMIC] my introduction to the group
Hello everyone, I guess I’m ready to introduce myself. I just got the results of my 3rd MRI and the evidence clearly supports my June 25th 2007 TM diagnosis. My attack happened around the 7th of March 2007. It started with numbness and tingling in my legs for a few of days with the sense that a couple of times I thought my legs might give out on me. I blamed it all on the fact that my time spent on the computer had quadrupled the same week and because I had a lumpectomy (not cancerous!) scheduled on the 15th of March. Began to feel a tingling sensation when I tipped my head down a few days before surgery and blamed it on the lack of sleep and the stress and fear of surgery. Didn’t notice much beyond the pain and bruising of having a ¼ cup of breast tissue scooped out for the next week but when that pain subsided I felt a continuous sense of shivering or buzzing and an electrical shock down to my finger tips and toes every time I tipped my head down with excessive tingling down my left arm. We now know the name for this symptom is called Lhermitte’s sign. Did not get to see a Neurologist until May1. At first the surgery department was blamed for giving me a “stinger” neck injury while under anesthesia. Then an MRI revealed a mass or lesion at the c4/c5 level, MS, tumors and TM were all considered. A lumbar puncture did not show evidence of a tumor, cancerous or otherwise but proteins associated with an attack of the myelin sheath were found. MS was dismissed because of my age (46) and absolute absence of lesions in my brain. My slow onset, extenuating circumstances and lack of dramatic symptoms made for a drawn-out diagnosis. I’ve never had walking difficulties nor many of the other issues TM survivors face and after reading these posts for the last few months I think I have no right to complain even though electrocuting yourself every time you tip your head down is no fun, found Lyrica on my own and asked my doctor for it but I’m wondering if there is something better I’d also love to hear if anyone else has had Lhermittes sign and if their symptoms improved over time? Mindy the Artisan Mindy King www.chairweaver.com www.mirthworkscreations.com
[TMIC] Hen3ry
The comedic songwriter's name is Tom Lehrer, I wondered if you were familiar with him when I saw the numbers in your name. Here's the quote from an evening wasted with Tom Lehrer I am reminded at this point of a fellow I used to know whose name was Henry, only to give you an idea of what a individualist he was, he spelled it H-E-N-3-R-Y. The three was silent, you see. Henry was financially independent, having inherited his father's tar-and-feather business, and was therefore able to devote his full time to such intellectual pursuits as writing. I particularly remember a heartwarming novel of his about a young necrophiliac who finally achieved his boyhood ambition by becoming coroner. ... (scattered laughter) The rest of you can look it up when you get home. In addition to writing, he indulged in a good deal of philosophizing. Like so many contemporary philosophers, he especially enjoyed giving helpful advice to people who were happier than he was. And one particular bit of advice which I recall - which is the reason I bring up this whole dreary story - is something he said once, before they took him away to the Massachusetts State Home for the Bewildered. He said: Life is like a sewer - what you get out of it depends on what you put into it. It's always seemed to me that this is precisely the sort of dynamic, positive thinking that we so desperately need today in these trying time of crisis and universal brouhaha. And so with this in mind, I have here a modern, positive, dynamic, uplifting song, in the tradition of the great old revival hymns. This one might more accurately be termed a survival hymn. It goes like this and then he launches into the song :We will all go together when we go Enjoy the memory! Min On Jul 11, 2007, at 8:56 AM, [EMAIL PROTECTED] wrote: Whatever it just don't make sence putting a number in a name. Rick, Long ago I listened to a record by Tom Lair (SP?). He sang a song made up of all the elements known at that time- long ago, in the 1950's- he also talked about a friend, Hen3ry, the 3 was silent. HaHaHa, I would laugh. When I was old enough, I started putting numbers into my name. HaHaHa, people would laugh. Years later, Mr. Gore and his buddies invented the internet, and passwords were born. Words with imbedded numbers were the ultimate passwords. So now you know how the 3 was born! pH
