FW: [TMIC] From hot, sticky, uncomfortable Essex
For others on the list who may have an interest in this story…….Cody in Austin From: Cody [mailto:c...@austin.rr.com] Sent: Tuesday, July 16, 2013 10:15 PM To: 'suerdlagpunga' Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex Dalton, I don’t think you have your facts straight on the little boy. You are right this is a tragedy and a disgrace that this could happen anywhere in America. This incident occurred in Maryland not Louisiana. See the link below. <http://ww2.gazette.net/stories/030807/prinnew190705_32325.shtml> http://ww2.gazette.net/stories/030807/prinnew190705_32325.shtml Cody in Austin From: suerdlagpunga [mailto:suerdlagpu...@gmail.com] Sent: Tuesday, July 16, 2013 8:08 PM To: Cody Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex I used to live in Texas; I'm am Aggie. Texss had a lot of good proframs. I benefited from good medical programs including Texas paying for some of my undergraduate time at A&M. But Louisiana is different. I will try to find that story because it was shocking. Original message From: Cody Date: 07/16/2013 18:50 (GMT-05:00) To: 'Dalton Garis' ,TMIC Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex Dalton, I just refuse to believe the story about the little boy who died from a Sepses infection was only attributable to not having $86.00 to be treated by a dentist. If they didn’t have the $86.00 for the dentist how did they have money for the medical treatment. I don’t know about medical services in Louisiana or New York but in Texas I know that we do have a program that provides for medical treatment and dental care for less fortunate children. It is called CHIPS. I very much support this program. Also FYI I have been in the hospital four or five times since I was diagnosed with TM. Medicare paid for 80% of the hospital cost, including extended ICU care, as well as 80% of my doctors all of whom were specialist. I am proud to say that I was more than happy to pay my 20%. Medicare paid these cost at very significant discounted rates. My 20% was also based on these discounted rates. Even with this I had to pay several thousand dollars for my portion. I cannot believe that anyone thinks for some reason that their country owes them free anything medical, retirement, or whatever. I think this country has some of the best medical care in the world. Many of the best physicians in the world receive their education and intern training in this country. I am appalled that you are anyone else thinks they are entitled to have so much given to them. Since you are an economist you of all people should know there is no such thing as a free lunch. The cost of all of the things you want for free must be borne by your fellow citizens of this proud nation. I am reminded of this quote from former President Gerald Ford: "A government big enough to give you everything you want is a government big enough to take from you everything you have. Presidential address to a joint session of Congress (12 August 1974) Cody in Austin, Texas From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Tuesday, July 16, 2013 1:31 PM To: Dalton Garis; I.WHIDDETT; Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex . . . And [please let me rant for a while] Why doesn't this country have free medical insurance for all its citizens ??? What is that ideological secret that this country presumes to understand that the other developed countries, all of which provide free medical care (and decent retirement, child care for working parents and free higher education, also, for that matter), has failed to grasp? How many dollars could be saved with free insurance, thus preventing much more serious and costly complications later on? I read some time ago of a boy in Louisiana who died of Sepses, the deadly blood infection, because his parents lacked the $86.oo needed to have him treated by a dentist for an abscessed tooth! Aren't economies for the purpose of providing for its citizens and societies a better life? Or, are they ideologies with names that we are to worship and for the purity which the welfare of society's members are to be sacrificed ??? Why are we being crucified on the cross of ideological purity? Why are forced to worship names, rather than working to establish an economy—regardless of its label—that serves the needs of all the people in a just and fair manner? [Thank you for letting me rant for a minute, because I hate, as a citizen of this proud nation, to pay even one dollar for medical services.] Dalton Garis Flushing, Queens New York, USA
RE: [TMIC] From hot, sticky, uncomfortable Essex
Dalton, That is just not how I see it. I see my citizenship as a matter of responsibility to provide for myself, my family, and last but definitely not lease for those less fortunate who cannot provide for themselves. I think it is those last eight words where you and I disagree. I would like to see the article about the little boy because I think you have used this to dramatize your ranting. I just don’t believe it was only a matter of not having $86.00 for a dental exam. Medicare and Medicaid or not Texas programs. They are federal programs that are paid for through taxation just like national defense and the other programs you mentioned. Every person (except for government employees and teachers) in the U.S who earns wages pays 1.5% of their gross wages for Medicare and their employer pays a matching 1.5%. Just for the record America is known by not only how we treat the weakest among us in our own nation but by how we treat others throughout the world. No other country gives so freely to others as does the American government and the individual citizens of this country. Cody in Austin From: suerdlagpunga [mailto:suerdlagpu...@gmail.com] Sent: Tuesday, July 16, 2013 8:21 PM To: Cody Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex It is a matter of citizenship what people expect to receive. Nothing is free. Medical care should be given but it is not free; rather it should be paid for through general taxation, just as are national defense, roads and highways and elementary and secondary education already, all of which are paid from tax re revenues. But it is not free. For the supplying the bare essentials of life, let us be known by how we treat the weakest among us and not the strongest. That is the true test of a Nation's greatness. Original message From: Cody Date: 07/16/2013 18:50 (GMT-05:00) To: 'Dalton Garis' ,TMIC Subject: RE: [TMIC] From hot, sticky, uncomfortable Essex Dalton, I just refuse to believe the story about the little boy who died from a Sepses infection was only attributable to not having $86.00 to be treated by a dentist. If they didn’t have the $86.00 for the dentist how did they have money for the medical treatment. I don’t know about medical services in Louisiana or New York but in Texas I know that we do have a program that provides for medical treatment and dental care for less fortunate children. It is called CHIPS. I very much support this program. Also FYI I have been in the hospital four or five times since I was diagnosed with TM. Medicare paid for 80% of the hospital cost, including extended ICU care, as well as 80% of my doctors all of whom were specialist. I am proud to say that I was more than happy to pay my 20%. Medicare paid these cost at very significant discounted rates. My 20% was also based on these discounted rates. Even with this I had to pay several thousand dollars for my portion. I cannot believe that anyone thinks for some reason that their country owes them free anything medical, retirement, or whatever. I think this country has some of the best medical care in the world. Many of the best physicians in the world receive their education and intern training in this country. I am appalled that you are anyone else thinks they are entitled to have so much given to them. Since you are an economist you of all people should know there is no such thing as a free lunch. The cost of all of the things you want for free must be borne by your fellow citizens of this proud nation. I am reminded of this quote from former President Gerald Ford: "A government big enough to give you everything you want is a government big enough to take from you everything you have. Presidential address to a joint session of Congress (12 August 1974) Cody in Austin, Texas From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Tuesday, July 16, 2013 1:31 PM To: Dalton Garis; I.WHIDDETT; Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex . . . And [please let me rant for a while] Why doesn't this country have free medical insurance for all its citizens ??? What is that ideological secret that this country presumes to understand that the other developed countries, all of which provide free medical care (and decent retirement, child care for working parents and free higher education, also, for that matter), has failed to grasp? How many dollars could be saved with free insurance, thus preventing much more serious and costly complications later on? I read some time ago of a boy in Louisiana who died of Sepses, the deadly blood infection, because his parents lacked the $86.oo needed to have him treated by a dentist for an abscessed tooth! Aren't economies for the purpose of providing for its citizens and societies a better life? Or, are they ideologies with names that we are to wor
RE: [TMIC] From hot, sticky, uncomfortable Essex
Dalton, I just refuse to believe the story about the little boy who died from a Sepses infection was only attributable to not having $86.00 to be treated by a dentist. If they didn't have the $86.00 for the dentist how did they have money for the medical treatment. I don't know about medical services in Louisiana or New York but in Texas I know that we do have a program that provides for medical treatment and dental care for less fortunate children. It is called CHIPS. I very much support this program. Also FYI I have been in the hospital four or five times since I was diagnosed with TM. Medicare paid for 80% of the hospital cost, including extended ICU care, as well as 80% of my doctors all of whom were specialist. I am proud to say that I was more than happy to pay my 20%. Medicare paid these cost at very significant discounted rates. My 20% was also based on these discounted rates. Even with this I had to pay several thousand dollars for my portion. I cannot believe that anyone thinks for some reason that their country owes them free anything medical, retirement, or whatever. I think this country has some of the best medical care in the world. Many of the best physicians in the world receive their education and intern training in this country. I am appalled that you are anyone else thinks they are entitled to have so much given to them. Since you are an economist you of all people should know there is no such thing as a free lunch. The cost of all of the things you want for free must be borne by your fellow citizens of this proud nation. I am reminded of this quote from former President Gerald Ford: "A government big enough to give you everything you want is a government big enough to take from you everything you have. Presidential address to a joint session of Congress (12 August 1974) Cody in Austin, Texas From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Tuesday, July 16, 2013 1:31 PM To: Dalton Garis; I.WHIDDETT; Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex . . . And [please let me rant for a while] Why doesn't this country have free medical insurance for all its citizens ??? What is that ideological secret that this country presumes to understand that the other developed countries, all of which provide free medical care (and decent retirement, child care for working parents and free higher education, also, for that matter), has failed to grasp? How many dollars could be saved with free insurance, thus preventing much more serious and costly complications later on? I read some time ago of a boy in Louisiana who died of Sepses, the deadly blood infection, because his parents lacked the $86.oo needed to have him treated by a dentist for an abscessed tooth! Aren't economies for the purpose of providing for its citizens and societies a better life? Or, are they ideologies with names that we are to worship and for the purity which the welfare of society's members are to be sacrificed ??? Why are we being crucified on the cross of ideological purity? Why are forced to worship names, rather than working to establish an economy-regardless of its label-that serves the needs of all the people in a just and fair manner? [Thank you for letting me rant for a minute, because I hate, as a citizen of this proud nation, to pay even one dollar for medical services.] Dalton Garis Flushing, Queens New York, USA From: Dalton Garis Date: Tue, 16 Jul 2013 10:59:27 -0700 To: "I.WHIDDETT" , "" Subject: Re: [TMIC] From hot, sticky, uncomfortable Essex Resent-From: Resent-Date: Tue, 16 Jul 2013 07:58:41 -0700 (PDT) My brother; Who lives in Connecticut and has contracted Lyme disease three times, clearly recalls my getting a tick bite and seeing the tell-tale bull's eye reaction at the bite site on the back of my leg, typical of Lyme disease. I became sick, but lacking any medical insurance didn't do anything about it, and eventually got better on my own. Then, years later, I contract slow-onset TM, get very sick, then mostly recover, with the exception of getting seizures due to an "anomaly" on the brainstem; plus the usual constant aches, bee-sting pains all over, fatigue and weakness. I take pregabelin, gabapentin, prozac, and dilation for seizures. My brother is convinced that the TM was caused by the latent effects of in-dwelling Lyme bacteria, and I am partially convinced by his point of view; partially, because it was in the Middle East--that caldron of diseases--where I caught, and was diagnosed as having, TM. It was likely a contributing factor that could have increased the likelihood of getting TM in the first place, and also likely changed the nature of my symptoms. That is, I could have gotten some other bug which, when combined with the Lyme disease bacteria, led to developing TM (or also could have been MS, for that matter). It&#
RE: [TMIC] Re: Attention -The TMIC List
I am still here but in pain LOL!…..Cody in Austin From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Thursday, May 2, 2013 3:47 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Attention -The TMIC List Sorry I am late to respond.Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
[TMIC] Standing Frame
I have had a standing frame glider since I was first paralyzed with TM from the chest down in 2001. I use it almost everyday. I like to stand and watch TV especially football or Jeopardy J. I remember the first time I got up in it, I could only stand for about 10 minutes because my blood pressure would drop and I would get light headed.. Now I stand for over an hour with no problems. I have had no recovery but I do think it helps keep me healthier especially my circulation. The link below will take you to the website where you can see my standing frame...Cody in Austin http://www.easystand.com/
Re: [TMIC] tm and the lungs
Thanks Janice. You know I have really enjoyed this machine. I get much better rest now. I thought I would hate it.Cody From: Janice Nichols Sent: Thursday, August 30, 2012 7:31 PM To: Cody ; john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs In everything I have read on TM and the problems that go with it, I would say you are right when you say we are compromised with our immune systems.Hope you get to where you will not need the bipap machine for long. Janice From: Cody Sent: Thursday, August 30, 2012 1:36 PM To: john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] tm and the lungs I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass wrote: makes sense. -- From: Mary Anne Egan To: john snodgrass Cc: transverse myelitis Sent: Wednesday, August 29, 2012 8:10 PM Subject: Re: [TMIC] tm and the lungs My daughter has lung issues second to tm but it is due to her level of loss which causes lung issues and weakness which results in her scarring etc Make sense? Mary Anne Egan Sent from my iPhone On Aug 29, 2012, at 6:45 PM, john snodgrass wrote: i would wonder about it in that the nervous system can effect the lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that have the lung troubhle just may have scar tissue,,but i would think that it would be to those that are using a ventilator From: Janice Nichols To: jeff bernier ; tmic-list@eskimo.com Sent: Wednesday, August 29, 2012 6:19 PM Subject: Re: [TMIC] tm and the lungs Have never heard of that before. Janice From: jeff bernier Sent: Wednesday, August 29, 2012 10:36 AM To: tmic-list@eskimo.com Subject: [TMIC] tm and the lungs ive been having a debate with another tmr on face book over this,she insist that tm can leave scar tissue and cause inflamation of the lungs,in all the research ive done over the last 13 years i have never heard of this,am i wrong?
Re: [TMIC] tm and the lungs
I was in ICU last December for two weeks with I very serious lung infection that required antibiotics into my bloodstream with a pic line and with incubation and feeding tubes. The doctors told me they could not tell if the infection began in my lungs or my bladder. I now have to use a bipap machine when I sleep. Still don't know if it was related my TM but my guess is the TM has compromised my entire immune system. I had an entire regiment of specialist including pulmonologist, neurologist, internist, radiologist, gastroenterologist, and probably others that I forgot. Anyway I was a pretty sick guy but they got me fixed..Cody in Austin Sent from my iPad On Aug 30, 2012, at 9:57 AM, john snodgrass wrote: > makes sense. > > From: Mary Anne Egan > To: john snodgrass > Cc: transverse myelitis > Sent: Wednesday, August 29, 2012 8:10 PM > Subject: Re: [TMIC] tm and the lungs > > My daughter has lung issues second to tm but it is due to her level of loss > which causes lung issues and weakness which results in her scarring etc > Make sense? > > Mary Anne Egan > Sent from my iPhone > > On Aug 29, 2012, at 6:45 PM, john snodgrass wrote: > >> i would wonder about it in that the nervous system can effect the >> lungs,,,like Jim,,,so perhaps the spasms or whatever happens to those that >> have the lung troubhle just may have scar tissue,,but i would think that it >> would be to those that are using a ventilator >> >> From: Janice Nichols >> To: jeff bernier ; tmic-list@eskimo.com >> Sent: Wednesday, August 29, 2012 6:19 PM >> Subject: Re: [TMIC] tm and the lungs >> >> Have never heard of that before. >> Janice >> >> From: jeff bernier >> Sent: Wednesday, August 29, 2012 10:36 AM >> To: tmic-list@eskimo.com >> Subject: [TMIC] tm and the lungs >> >> ive been having a debate with another tmr on face book over this,she insist >> that tm can leave scar tissue and cause inflamation of the lungs,in all the >> research ive done over the last 13 years i have never heard of this,am i >> wrong? >> >> > >
Re: [TMIC] Looking for input.
Bernie..You may find this strange but I’m just the opposite. When I get to cold my pain level goes up. In the summer I will go out on the back porch for the warmth and sunshine. We keep our home at about 76 or 77. In the winter even with the central heating I have a small portable heater in the bathroom because I get to cold in the shower. This TM thing is a strange affliction. Please call me this winter when you order up the snow. Maybe I can have time to go further south somewhere. LOL!.Cody in Austin From: Bernie Pelow Sent: Monday, June 25, 2012 10:46 AM To: Janet Dunn ; TMIC Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Cody in icu
Hi all, Just got in from the hospital. He is off the ventilator, still has feeding tube but they are going to do a swallow test and he may get off of it tonight or tomorrow. They have not found any sign that he is having any neurological problems and I felt like hugging the doctor. They still have some of the test that haven’t came in yet from the spinal tap, but he said he wasn’t expecting anything. He was doing well enough I came home to get some things done..Judy From: Bernie Sent: Wednesday, December 07, 2011 2:01 PM To: c...@austin.rr.com Subject: Re: [TMIC] Cody in icu Hi Judy, This Cody's friend here in Austin. We met at the group meetings we used to have at the library. I am so sorry this has happened to him! Please keep me informed as to what happens, and when you see him, give him my best regards and prayers for a speedy recovery. God Bless and I will keep him and your family in my prayers. Sincerely, Bernie
Re: [TMIC] Foot Surgery
My problem is not caused from walking. I can neither walk or stand at all. Additionally, I have no sensation at all. So I never know when I am putting to much pressure on a particular place whether it's my foot or my butt. I do stretch my Achilles but I can only do it by using my hands to pull my toes back toward my knees while sitting in the bed. I have custom designed inserts for my shoes to cushion my feet and relieve pressure. I also have padding on my wheelchair foot rest. This is why I am very inclined to have this surgery so I can relieve the balls of my feet from getting so much pressure. So if anyone has had this specific surgery I would like to hear from you.Cody in Austin Sent from my iPad On Apr 6, 2011, at 7:54 AM, Dalton Garis wrote: > No . . . > > But I solved all such problems by simply wearing a good pair of cowboy boots > with a "riding" heel. That is a taller heel that is underslung to make > walking with a tall heel no problem. I have drop-foot and now do not braces > or anything. > > Dalton > > From: Cody > Date: Tue, 5 Apr 2011 11:14:39 -0500 > To: "tmic-list@eskimo.com" > Subject: [TMIC] Foot Surgery > Resent-From: > Resent-Date: Tue, 5 Apr 2011 09:09:42 -0700 > > > My foot doctor has recommended that I have surgery to lengthen my Achilles > tendon by cutting a few strands of the tendon. Simple same day surgical > procedure. My feet tend to point downward (Peter Pan feet) which puts > pressure on the balls of my feet resulting in pressure sores. Has anyone else > had this procedure (Percutaneous tendo-Achilles lengthening)? I am interested > in hearing your thoughts pros or consCody in Austin > > Sent from my iPad >
[TMIC] Foot Surgery
> My foot doctor has recommended that I have surgery to lengthen my Achilles > tendon by cutting a few strands of the tendon. Simple same day surgical > procedure. My feet tend to point downward (Peter Pan feet) which puts > pressure on the balls of my feet resulting in pressure sores. Has anyone else > had this procedure (Percutaneous tendo-Achilles lengthening)? I am interested > in hearing your thoughts pros or consCody in Austin Sent from my iPad
[TMIC] OT-New Granddaughter
Holding my hand is my new Granddaughter Kaylee Rayann born 12-30-2010 6.1lbs.Cody in Austin
[TMIC] Stem Cell treatment
I notice this other article when I was reading the article about the quadriplegic injured in the accident that was treated with bone marrow stem cells. I think we would all be wise to proceed with an abundance of caution if we plan to seek any kind of treatment.Cody in Austin http://www.cnn.com/2009/HEALTH/07/14/stem.cell.regenocyte/index.html
Re: [TMIC] Foley caths--Condom cath
I have had a Foley for several years. At first I had UTI's including ones so bad I had to be hospitalized. Then the Dr. put me on a maintenance Antibiotic 75mg of Nitrofurantonin the generic for Macrobid. This was my idea not the doctors' because a paraplegic friend of mine had recommended it to me. He has Suprapubic foley which is essentially the same thing except it goes into the bladder through a hole made by the urologist. These work great for people that are thin but not so good for fluffy guys like me. I did the self Cathing routine and tried the condom catheters but I just hated the leaking accidents and the changing clothes. The foley with a leg bag is great and if you want to drink a bunch of beer all you have to do is get you a bigger bag. LOL! The worst accident I have had is just the other day the velcro strap came loose and the bag fell off my leg. Of course I didn't notice because I don't have feeling in my legs. I notice when I hit that bag with my electric wheel chair though. I am talking one big mess. That bag just exploded when that tire hit it. But like the saying goes "You haven't lived until you pee in your tennis shoe". LOL! Also I quit letting the my two little dogs on the bed. No telling what's on those little feet have on them when they come in from the backyard. Cats are bad too because they climb out of their litter box and straight to the bed to be petted. I don't have a cat, thank goodness. Anyway I decided to quit taking the Antibiotic a couple of months back and sure enough within a month or so I had a UTI so now I want quit taking it again. Just wanted to find out if it was working and that didn't take long at all. Oh well that's my story hope it helps someone..Cody in Austin From: James Berg Sent: Monday, October 18, 2010 3:54 PM To: Akua Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Foley caths--Condom cath When I was getting ready to leave the hospital the dr.s were telling me I had to cath every four hours after I left. Yet they were changing my cath in the hospital every three days? I argued that the more cathing that was done, the more the chance of infection increased. winning that battle I pushed for the condom catheter and that was used for the last week of my stay. I have been on the condom cath for 7 months now and even though it comes off now and then when I am transfering in or out of my chair, it still is way beter and cheaper than the internal cath. My wife and wonderful caretaker devised a method of taping the condom cath in place with two bands of narrow tape and it works prety well. I have had no bladder infections like I did when I was in the hospital with the internal cath. On Sun, Oct 17, 2010 at 1:12 PM, Akua wrote: That's what i was told, too. The perils of relying on the Foley were frighteningly depicted. and it was given as the reason why, as i was still in the hospital, my foley was removed and i was told to self-cath. ( a fairly brutal process, no teaching, lots of yelling sigh, how TM has exposed me to some hideous people) A On Thu, Oct 14, 2010 at 11:16 AM, Laura Beaudin wrote: Apparently, from what I've been told, the filling and voiding of the bladder play a big role in kidney health. I'm going to be preparing an article shortly about bladder care where I'll also be formally interviewing my urologist (among others). I'll be sure to get a better explanation at the same time. Laura www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org --
[TMIC] Shoes
I am having a terrible time with pressures sores on my feet. I am interested in hearing what kind of shoes those of you who have to use wheelchairs are wearing. My problem is my left foot turns inward and lays on my footrest on its left side. And that's where the pressure sore is located on the ball of my foot just behind my little toe. My wife just bought me a pair of ankle high boots which hopefully will tend to keep my foot straight with the ankle support. I have been wearing regular tennis shoes. I would be interested in what others are doing for shoes. The podiatrist put me in one of the boots with velcro they use when you have foot surgery. Because it has high ankle support it has tended to keep my foot straighter...Cody in Austin
Re: [TMIC] EASY STAND
Re: [TMIC] EASY STANDAkuaYes I am paralized from T-3/4. It helps with maintaining muscle and bone strength in my legs and my arms, blood flow and blood pressure, range of motion in my hips, and it helps me mentally to know I am doing something positive. It helps me with my arms and hips because the standing frame allows my legs to move back and forth as I move the hand grips/glides back and forth in the top of the frame. Basically the hand grips on top are connected to the foot shoes on the bottom of the frame with a resistance cannister in between, The reisstance cannisters look like shock abssorbers and you can dial in the the amount of resistance you want. I know all of this may sound complicated but it is a pretty simple operation. I transfer onto the seat from my wheelchair without using my sliding board. I think they sell for around $5K. My insurance company paid for it and I have had it for eight years. I am glad you ask about it because I have been kinda lazy lately. You can see a picture of mine at the following web site http://www.easystand.com/evolv-glider/index.cfm.. Let me know if you have any more questions.Cody in Austin - Original Message - From: Akua To: Cody Sent: Monday, August 17, 2009 8:15 PM Subject: Re: [TMIC] EASY STAND are you paralyzed? Does this help" In what way? Thanks AkuaI have one if you have questions, I will try to answer them....Cody in Austin - Original Message - From: Akua To: tmic-list@eskimo.com Sent: Monday, August 17, 2009 11:36 AM Subject: [TMIC] EASY STAND Anyone use an easy stand or equivalent? www.easystand.com -- -- http://www.akuadesigns.etsy.com http://www.artfarmpaperwworks.etsy.com http://www.akua.artfire.com http://Akuadesigns.ShopHandmade.com http://en.dawanda.com/shop/AkuaDesigns http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/ http://www.zencrochet.blogspot.com/ http://www.healrecover.blogspot.com http://www.akuahaiku.blogspot.com http://www.akualezli.blogspot.com http://imagecarve.blogspot.com/ http://lowgourmet.blogspot.com
Re: [TMIC] EASY STAND
EASY STANDAkuaI have one if you have questions, I will try to answer themCody in Austin - Original Message - From: Akua To: tmic-list@eskimo.com Sent: Monday, August 17, 2009 11:36 AM Subject: [TMIC] EASY STAND Anyone use an easy stand or equivalent? www.easystand.com --
Re: [TMIC] Re: Quadpost/Nitpicking.
AOL EmailJudeDon't beat your self up. I think the list needs a little fire to wake everbody up every now and again. You sure as hell did that. LOL!. There ain't nothing wrong with being a hip shooter. You just miss your target sometimes. Hang in there kid..Cody in Austin
Re: [TMIC] Question for people on Lyrica?
RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin - Original Message - From: Robert Pall To: LadyOwl1961 ; tmic-list@eskimo.com Sent: Wednesday, June 17, 2009 12:58 PM Subject: RE: [TMIC] Question for people on Lyrica? I have been on Lyrica for at least 3 years...I started with 2 pills a day (150mg each) and 2 years ago I increased it to 3 pills or 450 mg per day. I have had TM for 12 years and have found Lyrica to be the best drug as for helping the banding,numbness and pins and needles. The only side effects are they increase my appetite and you can not drink alcohol when you are taking Lyrica (I still have a beer or two..but no hard liquor). Rob in New Jersey -- From: LadyOwl1961 [mailto:k...@frontiernet.net] Sent: Wednesday, June 17, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Question for people on Lyrica? On May 6th of this year I was visiting friends in Thunder Bay, Ontario, Canada (where I am originally from and lived until 1999) when both myself and the friend I was staying with got a very bad chest cold that lasted 2 ½ weeks. It was actually longer but just the tired run down feeling lingered. I visited my family doctor in Thunder Bay on May 11th to have my prescriptions updated and refilled when during all of this and he reminded me about my TM symptoms flaring up after a very bad flu/cold as this seemed to be the trigger in my 1st. and 2nd bouts. I returned home to the States on May 25th. It was about June 1st. that I woke up at home and it was like every symptom of my TM was in over drive. With no health care and not knowing what else to do I called my doctor in Thunder Bay. He then talked to my neurologist himself and called me back telling me that they agreed I should increase my Lyrica gradually then decrease it again over the course of 2 months as my bouts seem to last approximately 3 weeks. I am in the middle of doing all of this right now. My question is that I am wondering about the increase and decrease and if you noticed any change in your moods? Lately for some unknown reason I am angry. Angry at any and everything and the least little thing can set me off (sorry for the read receipt thing). I am trying to figure out if this is due to the lyrica (a side effect is depression) or just my emotions over having another bout? Thanks Kathy (who now feels bad about her read receipt email)
[TMIC] Spinal Stimulator
I am currently taking 150mg 3XD of Lyrica for pain and 20Mg 2XD of Baclofen for spasms. The Baclofen is controlling the spasms but I still have alot of pain even with the Lyrica. I also take Hydrocodone for really bad days. Even with all of that my pain level is still bad. My neurologist sent me to a pain management doctor and I went for my first appointment today. The new doctor and I are considering trying a spinal stmulator to control my pain. The plan is for a one week trial run before doing anything permanent. This doctor has performed many of these applications but no patient with TM. Therfore, he is going to do some research and check with his colleagues before we do the trial installation. He asked me to do the same with other people with TM. I told him about our TMIC List. I am paralized from T-3/4 down with no movement or feeling below that level. I would appreciate hearing from anyone with a similiar paralysis level that has tried or is currently using a stimilator to control their pain. Any one else's comments/recommendations are welcome as well. If this don't work I am considering a morphine pump. Your comments are both welcomed and appreciated...Cody in Austin
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Re: [TMIC] stem cell (OT?)
Jim.I agree with you completely and I like your explanations for your position on using stem cells. My daughter saved the umbilical cord blood from my last grandson in hopes that it may be of some benefit from me or him if necessary. I do have feelings that haunt me regarding using these stem cells to help my situation. This is due to the fact that I am so tired of not standing or walking, dealing with constant bladder and bowel issues, and the 24/7 nerve pain that varies in intensity regardless of medication. I realize there are many who are worse than me with their TM. The reality for me is that if suddenly there was a myelin regeneration cocktail that was made from and could only be made from embryonic stem cells and I was hearing about success stories related to the treatment, I am not so sure I would be able to stick to my guns. The reality is that I might have to get in that line. I have three precious grandchildren and a whole neighborhood full of children that I have, for the most part, adopted as my own grandchildren. I have participated in numerous infant baptisms and I take my responsibnility toward all childen very seriously. I kind of relate it to the fox hole Christian logic. When the atheist has been pinned down from gun fire in his foxhole he just may be tempted to say a paryer or two. Just curious if you have had similar thoughts.Cody in Austin - Original Message - From: Jim Lubin To: jrushton ; Deborah Nord Capen ; tmic Sent: Thursday, March 26, 2009 12:21 PM Subject: Re: [TMIC] stem cell (OT?) Here it is. Worth watching. Stem Cells and Neuroregeneration - The Future Douglas A. Kerr, MD, PhD Johns Hopkins University, Baltimore, MD http://video.google.com/videoplay?docid=-25453169972889015 http://www.myelitis.org/rnds2008/stem_cels_MN_and_GRP_2008.pdf At 09:27 AM 3/25/2009, jrushton wrote: Thanks, Debbie!! If you don't watch/listen to anything else from that Symposium, you should truly look for that part! It is SO important because we have ALL been led astray and he makes it so easy to understand and he is the expert along with his staff!!! He is also one of the main ones trying so hard to get this passed in order to save those like you and I from living with our disabilities. Had it been available at our onset, we may have had a chance to be one of the 'lucky' ones and had this simple procedure done. I wish there was a way to show just that one section of the Symp... Is there, Debbie? It is so misunderstood that there will be those that could be helped but will refuse only because of the misunderstanding. Jeanne in Dayton ---Original Message--- From: Deborah Nord Capen Date: 3/25/2009 11:10:57 AM To: gbthomas8...@sbcglobal.net ; Westgold; Amanda Diskey; tmic-list@eskimo.com Subject: Re: [TMIC] stem cell (OT?) I will make just a short statement regarding this, as I do not wish to become involved in a debate. Dr. Kerr has stated in all of his talks that the BIGGEST mistake in the very beginning was to even give it the name "embryonic stem cells". They are NOT embryos. They are NOT aborted fetuses. They are "blastocysts" - only two cells that could not ever survive outside of a petri dish on their own. Because the scientists made this mistake in the beginning of giving it the name "embryonic stem cell", all of the right-to-life people came out and attacked this research from the git-go. If you view the talks from all of our symposia at http://www.myelitis.org/events.htm and listen carefully to Dr. Kerr's talks on stem cell research, you will have better knowledge of this. Regarding the idea of going out of the country to receive treatments, Dr. Kerr has also discussed this. The research is there, but the follow-up on the patients is lacking, so they have no record of how the patients did AFTER they left the country to go back home. Take care, Debbie Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Rashes
Todd...My doctor prescribed Phisohex Soap. You used to be able to buy this over the counter but now it's prescription. It cleared this on my legs in a week...Cody - Original Message - From: Jan Hargrove To: TMIC ; toddtm2...@sbcglobal.net Sent: Monday, March 02, 2009 4:41 PM Subject: Re: [TMIC] Rashes Todd, Another couple things to do for rash...NEVER bathe or shower with hot water, warm only and one of my dermatologists told me not to use a wash ragjust my hands to wash! Hope this helps!! jan --- On Mon, 3/2/09, Todd Tarno wrote: I know that we have talked about rashes before. A few months before TM, I had little red dots all over my body, so my doctor at that time took a biopsy of one and it came back as hives. Just told me that there wasn't anything he could do for me. I had rashes on my chest and down both arms few months ago. I saw two MD doctors, they both gave me different creams, which didn't work. Some of the rashes looked like ringworm, but not all of the rashes. Finally both doctors thought it would be good for me to see a Allergy & Asthma doctor. I have never had any problems with coughing, running nose, or eye watering. But the hives could have been an allergic. They did some test to see what I was allergic too. Now they give me shots with mite immunotherapy & environmental control until I have improvement of allergic symptoms. We put on a hypo-allergenic pat on our bed and use a Dove sensitive skin unscented beauty soap bar, hypo-allergenic, & fragrance fee. I'm also using a Triamcinolone Acetonide Cream. All of this has helped so much with the rashes. With our auto immune system & TM, we can now be allergic to new things, that we weren't before.
[TMIC] Christmas Card
I want get into weather since I live in Austin, but suffice it to say that after having spent six years in Wyoming and three years in Russia, I truly empathize with you folks in the colder areas of the world. I am so happy and thankful this Christmas because of all of the wonderful people in the world who have graced my life. They have always been there for me but I never noticed or appreciated them so much as I do now from the perspective of my wheelchair. My wife of thirty-nine years, (forty in June), my two children, my brother and four sisters, my three grandchildren, and my Mother are my constant guardians and continually lift my spirits with their warm touches, caring phone calls, visits to the hospital, and huge huge hugs. Thank goodness for all of the people I don't know who invade my space. Last night a little ten year girl holding the door for me at the restaurant. My doctors nurse who comforts me when I am on his exam table (you know the one). The kids in the neighborhood who bring cookies and their Moms and Dads who share those little ones with us and let us watch them grow. From Halloween to Halloween not just a new costume but a whole new kid. Life is grand. My TM family who I witness daily on my computer supporting and sharing their love and kindness with one another. Life is grand. My very best wishes to you and your family and to all of those who have graced your life, Merry Christmas and a Happy New Year. ...Cody In Austin, Texas
Re: [TMIC] 19 year TM Anniversary
Just a great job Jim. Thanks for everythingCody in Austin, Texas - Original Message - From: Jim Lubin To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, May 19, 2008 6:35 PM Subject: Re: [TMIC] 19 year TM Anniversary At 10:02 AM 5/18/2008, [EMAIL PROTECTED] wrote: As most others, when I was diagnosed with Transverse Myelitis, I had not heard of it . If it weren't for this access to others with TM I would surely feel like the "Lone Ranger" in a negative way. When I came home from the hospital in 1990 and got back online, I searched all the online services I was on (GEnie, Compuserve, Delphi) for any information on Transverse Myelitis. I didn't find anything. When I first got Internet access in 1991 using a friends university account, I found a few message from people asking questions about it. I later got on Prodigy and AOL. In 1994 I put together my "disAbility Resources and Information" web site gathering whatever information I came across. I started emailing one person with TM. He thought it would be neat to have a "Transverse Myelitis Internet Club" so we could communicate with others. When my internet service (eskimo.com) made email list group an option I started one for quadriplegic and one for vent-users. I started the tmic-list a few months later and sent a message to the 10 or so people I had come across who had mentioned or asked about transverse myelitis. That's how this list started. In 1997 I offered to make a web site for the Transverse Myelitis Association. We still didn't have much information at that time but at least we had a way people could find us. In 1998 I was picked by New Mobility magazine to be their "Person of the Year". That was mostly because of the emails they received from people on the tmic-list. You are an inspiration and a rebuke to me, one of the "walking wounded" who still tends to complain of the fatigue, banding, etc. when I have not have the misfortune of paralysis. You no doubt have had to work hard to function as you do. Actually, I have not had to work at all. The only things I can do for myself is operate my wheelchair and my computer. Before I'm put into my wheelchair, I'm just lying in bed. I can't even turn my head, so there is nothing I can work at. Once my mom or nurse put me in my wheelchair I sit in front of my computer all day. Jim Lubin [EMAIL PROTECTED] Home Page: http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] UNBELIEVABLE!
Rob..I believe that my TM affliction was related to stress as well. This is why: I had an extremely stressful job as the lead financial analyst for the country of Kazakstan following the Exxon-Mobil merger. All of the properties were heritage Mobil and none of their Kazakstan financial staff came over after the merger which meant I had to start everything from scratch into the heritage Exxon accounting system. On top of that Kazakstan was generating tons of cash which generated tons of complex questions from upper management. Then they gave me a fresh out of school accounting major/football player to train. (Controllers fraternity brother). He couldn't find his butt with both hands. He ended up getting fired for misuse of his corporate credit card. During this time I decided to go on the Scarsdale diet which I had success with before. I was also doing a couple of miles on the treadmill or playing racquetball during lunch at the YMCA. I think the combination of all of this caused my body to degrade to a low and very susceptible level. So I think that when whatever it was that got into my spinal cord virus, bacteria, or etc found a a very vulernable situation. Then my immune sytem attacked and destroyed the myelin. I never had any lesions. All my nuero found from the MRI and spinal tap was an increase in the protein level in my fluid. Needless to say my diagnosis was idiopathic. I am paralized at T-3/4 with absolutely no recovery. Seven years ago this April the 8th. It happened very fast, less than 24 hours and they diagnosed me very fast and put me on the IV prednisone treatment. All to no avail. I was in the Methodist acute care hospital in Houston for a month and in the TIRR therapy hospital for a month. I'm not sure if the medical folks that treated me did me no good or if they were successful at limiting my paralysis to T-3/4. At any rate I am thankful that I can still use my arms.....Cody in Austin (No clouds, no wind just sunshine and 80 degrees and tons of little peaches on our two trees.)
[TMIC] Thanks for prayers
Cody got out of the hospital yesterday. Thank you for all your prayers and well wishes. Judy
[TMIC] Cody
Cody is doing better. No fever, blood pressure stable, still weak but getting stronger, he does have a high protein count in his urine. They are going to do a kidney biopsy Friday to try and figure out why it is so high. I'll let you know what they say. Judy
[TMIC] Cody report
Cody's kidney function was back to normal today. Still lots of blood in his urine and still on iv antibotics for both the MRSA and the ecoli. He was awake more today his sleep more normal. No fever this afternoon, but his blood pressure was a little low 90/60. He was joking and flirting with the nurses, so he is really on the mend. Judy
[TMIC] Prayers for Cody
Please keep Cody in your prayers. He is in the Hospital with acute renal failure and Infection that has gone into his blood stream. Then this afternoon we found out he also has MRSA and they have taken more blood to see if that has gone into his blood stream. His kidneys as of today were working at only 15% but his blood pressure has stablized. He is still very weak and can't sit on his own. Judy
Re: [TMIC] dental procedure
Tobe..I have two that were put in last year. It is a long process. They put the post in and then the bone in your jaw has to grow in and around the implants. It took about eight months from start to finish for me. The oral surgeon part to install the implants took most of the time. I had to go in for xrays once a week, then every two weeks to make sure they were healing properly. The dentist part to install the crowns on the post was real easy and took just a few minutes. It was worth it and they work great with no problems thus far.Cody in Austin - Original Message - From: T Kanon To: tmic-list@eskimo.com Sent: Monday, October 22, 2007 7:00 AM Subject: [TMIC] dental procedure Hi TM Friends, Have any of you had dental implants or a dental post put in. I am now a candidate for either one and I'm not sure I want foreign metals imbedded in my gums. What should I do? Thank you all again for your input. Love ya. Tobe Brooklyn NY __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] Wheelchairs
I am about to switch to an electric chair from a manual chair. I have so far narrowed my choice down to a Shoprider 10Runner. The primary reasons are, it has a very tight turning radius 21.5inches. It only weighs 192 lbs so I can lift it with the crane in my pick-up which I use for my my manual chair. The crane will lift 250 Lbs. Also, the chair has a weight capacity of 300Lbs so I will have some growing room which hopefully I want use. The other thing is this chair disassembles into three parts with the heaviest part being about 35lbs for the batteries. This will allow my wife to put it into the car if necessary. However, the salesman told us that taking it apart and reassembling is much harder than it looks i.e he does it all the time so he tends to make it look easy. If anyone has any feedback negative or positive I would be interested in hearing from you. They are supposed to bring it to me on Monday so I can try it out in my home before I purchase it. By the way it is Medicare approved subject to a prescription from a doctor. For any of the chairs I would recommend that you go to the manufacturer's website and read the specifications for the chair and if available the owners manual. I know I learned a lot about the Shoprider by reading the owners maual. Things like battery maintenance and charging, the limits on inclines and curbs the chair could negotiate safely, off-road use, and etc....Cody in Austin
Re: [TMIC] b-day
NaomiI have the same problem with UTI'S. The latest thing I have done is went on a low dose antibiotic that I take everyday. I am also using a vinegar/water bladder irrigation every other day. If this don't work I will have to go back to self cathing which I hate. I like the foley but it sure does caiuse UTI's in a big way..Cody in Austin - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, June 05, 2007 8:26 PM Subject: Re: [TMIC] b-day Natalie, It's funny how our birthday presents changed after having TM. I'm glad your husband made dinner for you. Sounds like you had a pretty good birthday after all I wish I was able to self cath. I have a Foley catheter and I have more UTIs than ever. We take all the necessary precautions, and I still end up with an UTI. I have an appointment tomorrow to have my catheter changed, and I'll get another urine analysis, but I already know the results. Even without the catheter, when I wore briefs, I was still plagued UTIs. Before TM, I never ever had UTI's. Naomi C-4 quad since July 2, 2005 -- See what's free at AOL.com.
Re: [TMIC] Reason for TM
LindaI have heard this one both ways. Some docotrs say get the immunizations and others have been told the opposite. My TM diagnosis was in 2001 and I have taken flu vaccinations every year since and last year a pneumonia vaccination with no problems. I was never told or lead to believe that my TM was at all related to the immunizations. My thought is if they can't tell you what causes TM then how can they tell you what to avoid to keep from having an additional episode...Cody in Austin - Original Message - From: Linda Egli To: tmic-list@eskimo.com Sent: Monday, May 21, 2007 2:44 PM Subject: Re: [TMIC] Reason for TM When I was dx with TM, my neuro told me never to have any kind of immunization again. So for me, no flu, pneumonia, or even any more tetanus shots. Linda natalie mizenko <[EMAIL PROTECTED]> wrote: Hi Linda, I had a flu shot this year & I was trying to think if mine might have been from that. No one ask me (a dr.) if I had had a ful shot or anything like that. I'm kinda baffled no doctor tried to find out why I had gotten TM, (IF there was a reason that we could know why). Natalie Linda Egli <[EMAIL PROTECTED]> wrote: I was told my TM was probably the result of my flu shot 11/03. Had intermittent numbness on the right side after that, but it always went away until 2/04. Then numbness & muscle weakness progressed from my toes to my chest & was dx with TM by 4/04. natalie mizenko <[EMAIL PROTECTED]> wrote: To everyone w/ TM: Do most of you know why you got Transverse Myelitis? I was not told a reason why I had gotten it. Even at Baylor University. I don't recall anyone asking me if I had been ill w/ anything prior to the TM. I was just curious to know how your drs. addressed you. One leg was paralyzed after a fall on December 13th and by Christmas I was totally paralyzed from T12 down. It took them too long to determine what I had; therefore, the steriods did not help; although I also realize they don't always aid in recovery. I was sent to a rehab center w/ the one leg paralyzed and became totally paralyzed there. They should have had an accurate diagnosis before sending me to the 1st one; but apparently the one they used was not accurate. I know I was sent there too soon. And the second one I went to I was verbally abused and acquised of saying things I did not say such as to an aide. That is one reason I decided to even leave my state for help and go elsewhere to Baylor. I was treated completely different there - it was certainly worth going there. By the time I returned home I had been gone for 3 months!!! Natalie Mizenko You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta. Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://us.rd.yahoo.com/evt=48516/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 hot CTA = Join Yahoo!'s user panel
[TMIC] Re: Handicap Parking
I forgot to mentioned one other absurdity. The Attorney general for the State of Texas is also in a wheel chair.Cody
[TMIC] Handicap Parking
While on the suject of parking! I am currently in a war with the State of Texas no less. As a licensed investment advisor in the State of Texas I have a need to visit the Texas State Securities Board in downtown Austin from time to time. They have no handicapped parking. They do however have parking for all of their employees in the basement of the building. When I complained I was told they were not required to provide handicapped parking because they did not provide parking for anyone except of course the state employees. I tried to explain how dangerous it is to unload on the street from your car to a wheel chair but that did not matter. The streets around the building are all six lanes one ways on hills with lots of traffic. I wrote several letters to the governor to no avail. Didn't even get a response from him or his so called disability committee. I contacted the Department of Justice and they confirmed that the State did not have to provide parking for me since they did not provide parking for anyone else. I am concsidering sueing the State of Texas over this. The absurdity of this is that the Texas Securities Board Building is handicap accessible once you get there. The problem is I can't there with out risking my life in the street. My temporary solution is for my wife to park in a delivery parking space just for state employees visiting the building under one side of the building. I unload there then she parks the car on the street. When the security guard for the building complains about it I just tell him to go hell and to have me arrested. He knows me well. He puts his hand in my face and tries to talk to my wife. So far this has worked. What an insult this to people who need handicapped parking....Cody in Austin
Re: [TMIC] TM Question
Sally and DebbieWell the Lymphonema Clinic trip was bad. First of all I tipped my wheel chair over backwards going down a ramp into the crosswalk. I ended up on my back in the middle of the street. People came running to me form everywhere. When they lifted me up there were cars parked in the street with the doors standing open where they left them coming to my rescue. No damage to me or my wheelchair. My wife fell trying to catch me and scraped her knee a little. I was pleasantly surprised by the assistance offered by all of the strangers passing by. Once in the clinic I found out I will need to go to therapy three times a week for four weeks. They will massage and wrap my legs to reduce the swellling. Once the swelling is down they will put the support hose on them. I will probably have to wear them the rest of my life. I will be able to stop taking the Lasix and the coumadin. Then I went to the scales and found out I had gained a bunch of weight. When it rains it pours. I am now on Effexor and Lyrica as I try to get completely off the Lyrica. Pain level has increased some. Will keep you posted on the progress...Cody in Austin - Original Message - From: Sally Wilkinson To: 'Cody Kidwell' Sent: Monday, December 04, 2006 3:53 AM Subject: RE: [TMIC] TM Question Hi my husband had to come off Lyrica as his whole body became swollen including his chest which in turn caused him to have breathing difficulties! He got off Lyrica ASAP. He then found his legs jumped like mad when he went to bed so he started just taking 75mils at night, which did not cause any side effects but did help stop the legs jumping! He is now off it completely as he is awaiting a spinal implant and was asked to take as little as possible drug wise as he has now been taught different methods to deal with his pain. Hope this helps. Regards Sally in the UK -Original Message- From: Cody Kidwell [mailto:[EMAIL PROTECTED] Sent: 01 December 2006 22:43 To: TMIC; [EMAIL PROTECTED] Subject: Re: [TMIC] TM Question Debbie Iam going to a Lymphnema Clinic on Tuesday for the swelling. I am trying to get off the Lyrica and back on hte Effexor. I did better witht he Effexor. I think the Lyrica is affecting my breathing as well. Have you noticed any breating problems?....Cody - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, November 30, 2006 10:27 PM Subject: Re: [TMIC] TM Question In a message dated 11/27/2006 9:13:43 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Todd and Rogette.I have had a lot of leg swelling since I started the Lyrica. I was taking 150mg 2XD and I am now up to 300mg 2XD. It still does not completely control the pain. Today I asked my neurologist about switching back to the Effexor. He agreed to switch me back. I had taken Effexor before after Lenora from the TMIC list said it had helped her. I switched to the Lyrica when it first came out hoping it would be the answer. I think all in all the Effexor worked better. I would be interested in hearing about others experience with Lyrica and EffexorCody in Austin - Original Message - From: Todd Tarno To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 27, 2006 4:03 PM Subject: Re: [TMIC] TM Question Yes this is part of TM. I use Lyrica twice a day and Nortriptyline once at night time. It doesn't stop it completely, but it does help a lot. I never got to go to a pain clinic where they could really know what medications to give me. That would be a great place to start. Todd in Corpus Christi, TX [EMAIL PROTECTED] wrote: I have had TM for six months. I have it from the waist down and was initially paralyed from the waist down. I am now walking on a walker and semi on a heme cane. However, I get these strange sensations from the nerves in my legs and when I am laying down a burning sensation in my thighs that really hurts. Have any of you experienced this and is this medication for it? Hi Cody, I also have had extreme leg swelling with Lyrica. I was on Nuerontin initially and then switched to Lyrica. I think the Lyrica helps, but the swelling is awful! Debbie in Atlanta
Re: [TMIC] TM Question
Debbie Iam going to a Lymphnema Clinic on Tuesday for the swelling. I am trying to get off the Lyrica and back on hte Effexor. I did better witht he Effexor. I think the Lyrica is affecting my breathing as well. Have you noticed any breating problems?Cody - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, November 30, 2006 10:27 PM Subject: Re: [TMIC] TM Question In a message dated 11/27/2006 9:13:43 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Todd and Rogette.I have had a lot of leg swelling since I started the Lyrica. I was taking 150mg 2XD and I am now up to 300mg 2XD. It still does not completely control the pain. Today I asked my neurologist about switching back to the Effexor. He agreed to switch me back. I had taken Effexor before after Lenora from the TMIC list said it had helped her. I switched to the Lyrica when it first came out hoping it would be the answer. I think all in all the Effexor worked better. I would be interested in hearing about others experience with Lyrica and EffexorCody in Austin - Original Message - From: Todd Tarno To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 27, 2006 4:03 PM Subject: Re: [TMIC] TM Question Yes this is part of TM. I use Lyrica twice a day and Nortriptyline once at night time. It doesn't stop it completely, but it does help a lot. I never got to go to a pain clinic where they could really know what medications to give me. That would be a great place to start. Todd in Corpus Christi, TX [EMAIL PROTECTED] wrote: I have had TM for six months. I have it from the waist down and was initially paralyed from the waist down. I am now walking on a walker and semi on a heme cane. However, I get these strange sensations from the nerves in my legs and when I am laying down a burning sensation in my thighs that really hurts. Have any of you experienced this and is this medication for it? Hi Cody, I also have had extreme leg swelling with Lyrica. I was on Nuerontin initially and then switched to Lyrica. I think the Lyrica helps, but the swelling is awful! Debbie in Atlanta
Re: [TMIC] TM Question
Todd and Rogette.I have had a lot of leg swelling since I started the Lyrica. I was taking 150mg 2XD and I am now up to 300mg 2XD. It still does not completely control the pain. Today I asked my neurologist about switching back to the Effexor. He agreed to switch me back. I had taken Effexor before after Lenora from the TMIC list said it had helped her. I switched to the Lyrica when it first came out hoping it would be the answer. I think all in all the Effexor worked better. I would be interested in hearing about others experience with Lyrica and EffexorCody in Austin - Original Message - From: Todd Tarno To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 27, 2006 4:03 PM Subject: Re: [TMIC] TM Question Yes this is part of TM. I use Lyrica twice a day and Nortriptyline once at night time. It doesn't stop it completely, but it does help a lot. I never got to go to a pain clinic where they could really know what medications to give me. That would be a great place to start. Todd in Corpus Christi, TX [EMAIL PROTECTED] wrote: I have had TM for six months. I have it from the waist down and was initially paralyed from the waist down. I am now walking on a walker and semi on a heme cane. However, I get these strange sensations from the nerves in my legs and when I am laying down a burning sensation in my thighs that really hurts. Have any of you experienced this and is this medication for it?
Re: [TMIC] RE
Victoria..I have the same pain as you have described. I also take milk thistle (1000mg 1XD) and I was thinking maybe the pain was associated with the cleaning effect on the liver and kidneys. Since being on the milk thistle I have had a problem with a lot of sediment being deposited in my bladder. So much so that it has stopped up my Foley catheter on several occasions. I now do a bladder irrigation every two days. The sediment production has declined significantly in the last two weeks. I go to my urologist on the 12th of September so I will ask him about the sediment and get him to do a cystascopy if necessaryCody in Austin - Original Message - From: Victoria To: tmic-list@eskimo.com Sent: Tuesday, August 29, 2006 3:34 PM Subject: [TMIC] RE HI Gang--I don't know if anybody is interested in this , BUT!! I keep having recurrent HORRIBLE pain across my back.in my kidney area. The pain sometimes shoots up my shoulder blades or scapulas. Other than lying in the ER all nite (which I've previously done) on IV narcotic meds for the pain, I've found something else that works miracles, & I had a hard time believing this too, till I tried it: MILK THISTLE. When the pain starts for me, I take about 4-6 a day..& the pain goes away. I've told other tm'ers about this herbal product as well, & I'm not the only one who has had the same effect. I read online that milk thistle relieves the "congestion" in the liver & kidneys. In MY case, my tm was caused by exposure to toxic molds, which I inhaled. I have proof of that now. If anybody's interested, check with your doctorsbut it sure works for me. God bless, all. Victoria
Re: [TMIC] swelling
I have bad swelling in my left leg and I have had this going on for the last year or so. Last October my PCP sent me for a sonogram and I had blood clots all up and down my left leg. They put me on blood thinners and now the blood clots are all gone. I had a sonogram a week ago and it was all clear with no clotting present. My leg is still swollen however and my PCP has now put me on a diuretic. I have been on the diuretic for two weeks and the swelling is still present. It may be slightly better. I think I am going back to the doctor. Something is just not rightCody in Austin - Original Message - From: ROGER C PRATT To: dennis rabalais ; tmic Sent: Thursday, July 06, 2006 6:46 PM Subject: Re: [TMIC] swelling I also have swelling of my ankles and feet. My doctor said it was a side-effect from some of the medication I'm taking, but I don't believe it as it's been a problem off and on since I got TM and before I was on this medication. I'm stumped and the doctors don't seem to know anything about it. - Roger - Original Message - From: dennis rabalais To: tmic Sent: Thursday, July 06, 2006 3:57 PM Subject: [TMIC] swelling question to all t.m. er's. do you all have problems with swelling at the feet or ankles? i have had one foot to swell for 2 months. is this part of the disease?
Re: [TMIC] I Tried Lyrica
DennisI was on the Effexor before I switched to Lyrica. The Effexor worked pretty good. Whe I first went on the Lyrica I was still on the Effexor for awhile. Actually it seems the combination of both of them worked best. Right now I am just on the Lyrica. In all cases I still had the nerve pain but the Lyrica and/or the Effexor seemed to do the best at reducing the pain. Better than the nuerontin, marinol, or topamax ...Cody in Austin - Original Message - From: <[EMAIL PROTECTED]> To: Sent: Wednesday, June 07, 2006 6:58 PM Subject: [TMIC] I Tried Lyrica - Forwarded by Dennis Galvin/ADMIN/UCCSN on 06/07/2006 04:10 PM - Dennis Galvin To: 06/07/2006 11:55 cc: AM Subject: I Tryed Lyrica My Dr. gave me some samples of Lyrica. I took it one night then the next morning. That afternoon I took a ride with my "hand-cycle" after I was done I stopped in for a beer. As I was sitting there, I kept falling asleep, I got a ride home because I didn't feel safe driving. The bad part was that I wasted 2/3 of a can of beer. I don't know if it was the Lyrica or if I had a little bug because I was real tired all weekend. I have tried taking it a few evenings but when I woke up I feel very disordinated I called my Dr. this morning and she is going to give me Cymbalta. I'll give it a try this weekend. Has anyone Cymbalta? If that doesn't work she said that they have found out that very high doses of Effexor 150 mg plus per day works good on nueropathic pain even though it is an anti-depressant. I'll keep you informed. Dennis from Reno PS. Wendy & Neill send me an email
Re: [TMIC] Lyrica
Jude.I have had the banding but it has not really been that painful or bothersome compared to the burning and tingling in my lower extremities. I really can't say if the Lyrica has helped with he banding or not because I don't pay that much attention to the banding..Cody in Austin - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, February 23, 2006 8:36 PM Subject: Re: [TMIC] Lyrica In a message dated 2/23/2006 4:57:35 PM Central Standard Time, [EMAIL PROTECTED] writes: I have been on Lyrica for over two months now. I was taking Neurontin and Baclofen. I quit the neurontin and Baclofen a couple of years ago and started taking Effexor which worked pretty good for my pain. I also tried the Marinol but it made me feel to lethargic so I quit that pretty quick. I am now weaning myself off the Effexor. In about one more week I will be completely off the Effexor. The Lyrica seems to be working pretty good but I want to see how it works without any other medication for the pain. So for so good..Cody in Austin Cody, My interest in Lyrica is in the eradication of the terribly tight banding sensation that people talk about. I am plagued with a pretty good case of it around my torso. Has it helped you in that way too? Thanks, Jude Peace, Light and Lovefromme
[TMIC] Lyrica
I have been on Lyrica for over two months now. I was taking Neurontin and Baclofen. I quit the neurontin and Baclofen a couple of years ago and started taking Effexor which worked pretty good for my pain. I also tried the Marinol but it made me feel to lethargic so I quit that pretty quick. I am now weaning myself off the Effexor. In about one more week I will be completely off the Effexor. The Lyrica seems to be working pretty good but I want to see how it works without any other medication for the pain. So for so good..Cody in Austin
[TMIC] Spill
I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the shower chair. I was not transferring. I was just sitting in my chair and had grabbed the remote to turn on the TV to watch while taking a shower. It happened so quit I am not real sure what happened other than I landed in the floor. I think I had a spasm in both legs and maybe my back or abdomen. I think my legs and body just had a spasm and my legs straightened forward causing me to slide forward and the wheelchair to tip forward causing me to slide out and down to the floor. I landed on my bottom with my legs crossed in front of me. No body damage or bruises or anything. Just my pride was hurt. My son came over and scooped me up and on to the bed. We checked the wheelchair and nothing had came loose or anything wrong that we could find. I guess I just need to be more careful...Cody in Austin
Re: [TMIC] RE: Fish oil
Krissy..I take a fish oil gel tab in the morning and a flax oil gel tab in the evening. Both of the bottles say source of omega 3. I am taking both of them just to get rid of them. I will switch to one or the other when I get rid of my current supplyCody - Original Message - From: ROBERT COOK To: Krissy ; TM List Sent: Tuesday, October 18, 2005 1:50 PM Subject: RE: [TMIC] RE: Fish oil U R ASKING THE WRONG PERSON, HERE, IF ADDRESSED TO ME. - Original Message - From: Krissy To: TM List Sent: 10/18/2005 1:32:41 PM Subject: [TMIC] RE: Fish oil isn't flax seed oil good too? (I cant take the fish oil, I am allergic to fish ) Krissy
[TMIC] Cody out of hospital
Cody got out of the hospital. He is doing fine. He will have 4 more days of shots then stay on the blood thinners for about 6 months. I'm sure he will send a note later. Thanks for the notes and prayers. Judy
[TMIC] Cody in hospital
Cody was put in the hospital yesterday for blood clots in his left leg. Please keep him in your prayers. He is doing well, but depressed and blaming himself because he didn't prevent himself from getting them. I think it knew it was blood clots, but it took four days to convince him when one leg swells like that it could be clots. I had to mention Bob's name a couple of times to get him to call the doctor. We had also just lost a friend to a clot that went to her lung last month so I had to bring that up to him. He is in Seton Hospital and his phone number there is 512-324-1358. Judy
[TMIC] Acupuncture
I have decided to try some acupuncture sessions to see if it will help with my nueropathic pain. I would be interested in hearing from anyone who has tried acupuncture and if it helped them. I have been to three sessions so far. I have not noticed any real difference in the pain level. I would appreciate any feedback anyone is willing to provide.Cody__Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
