[TMIC] CBD
Has anyone tried this? I am on day 3 test of CBD as made by Bluebird pharmaceuticals, 15 drops twice a day. It's been on CNN as a product that stops seizures in children. CBD is one of twentysome thing dirivatives of cannabis. It is non psychoactive and legal in all 50 states with out any special license. This is a 21.6 percent CBD, with 0.67 percent THC product. It is made from special cannibis plants that have been bred to delete THC from the plant. So far no results except a bad taste in my mouth, something like lawn grass. Anyone else tried this?
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
I am still trying to find Meiling Caperton: Does anyone have contact with her? On Fri, Mar 21, 2014 at 10:58 AM, James Berg wrote: > Pat--You misunderstood what I wrote. I was taking 150mg twice a day and I > consulted with Sandy because my leg spasms had ceased. Sandy had me > consult with my GP since I don't have a neuro. Sandy did not act as a > doctor. > > > On Thu, Mar 13, 2014 at 4:59 AM, Dalton Garis wrote: > >> Patti; >> >> Have you heard of River Pharmacy? www.riverpharmacy.ca it makes it >> possible to take what you need for much less money. >> >> Dalton >> >> >> From: Pat Voorheis >> Date: Wed, 12 Mar 2014 20:05:27 -0400 >> To: James Berg >> Cc: Janice Nichols , Dalton Garis < >> malugss...@gmail.com>, Linda Egli , transverse >> myelitis >> >> Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii >> Resent-From: >> Resent-Date: Wed, 12 Mar 2014 15:57:30 -0700 (PDT) >> >> James, >> Please tell me why you want to reduce to 50mg twice daily after >> consulting with Sandy. I was taking 100mg 3 times daily for about a year, >> but reduced to twice daily due to cost, not due to medical reasons. Is >> there something about Lyrica Sandy made you aware of that I should be >> concerned about? As you both have stated, we learn more from the TM >> Association than we learn from our doctors and Neuro's. >> >> Patti - Michigan >> >> On Mar 12, 2014, at 3:34 PM, James Berg wrote: >> >> Hey Dalton and everyone else, Aloha. I just want folks to know that >> thanks to Dalton letting me know about Lyrica, I've gotten control of my >> leg spasms. I'm taking 150mg. 2 times a day and suddenly a week ago my >> spasms stopped! >> Not having a neuro so consult with Sandy, yes our Sandy, has been >> counseling me about stopping the Lyrica and after discussing it with my GP >> I am doing a gradual reduction and will soon be down to the 50mg. Dalton >> has reduced to. >> Lyrica has been a god send to me. Thanks Dalton. >> >> Jim >> >> >> >> On Wed, Mar 12, 2014 at 7:48 AM, Janice Nichols wrote: >> >>> Dalton - not offended!! >>> So glad you are doing so well.Isn't it strange the things we >>> discover ourselves that help us?Doctors can still be so clueless about >>> some things - on the other hand, they can >>> save our lives! >>> >>> Janice >>> >>> >>> *From:* Dalton Garis >>> *Sent:* Wednesday, March 12, 2014 11:26 AM >>> *To:* Linda Egli ; tmic-list@eskimo.com >>> *Subject:* Re: [TMIC] Meiling Caperton, Kanohe, Hawaii >>> >>> Say, Folks! >>> >>> Nice to hear a voice crying in the wilderness. I am still here, also. >>> >>> By the way, someone hacked my Facebook so had to change my name, to >>> Abdu'l-Hanif Al-Shukri - let them try to hack that one! So, if you >>> remember me, for instance Meiling, and you want to "friend" me, I'm still >>> out there. >>> >>> Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of >>> trying. Can't go below that amount, discovering that is what is actually >>> required to cover most of the pain. My memory is better and am less >>> anxious about losing my mind to fog and dopiness. >>> >>> And went 28 days without a seizure, the longest time since getting the >>> first one in 22 April 2010. Want to know what reduced their frequency? - >>> not taking all those vitamin supplements anymore. It seems the minerals in >>> them were interfering in some way with the nerves, especially magnesium. >>> Visiting my mother in Massachusetts - she's 97 - I forgot to bring any and >>> went without for a week. Returning home I realized that I hadn't had any >>> seizures, and guessed that the only change was in not taking all those >>> vitamin supplements. So I stopped, and sure enough, the seizures became >>> very infrequent. Who knew? >>> >>> Now is the Baha'i month of the Fast, when Baha'is go without food and >>> drink during the hours when the sun is in the sky, for 19 days, the last >>> month of our year. (In our calendar there are 19 months of 19 days, with 4 >>> or 5 inter calendar days just before the month of the Fast). We eat and >>> drink after sunset or before sunrise but not during the hours of sunlight. >>> Smoking is also prohibited, as it is considered a form of
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
Pat--You misunderstood what I wrote. I was taking 150mg twice a day and I consulted with Sandy because my leg spasms had ceased. Sandy had me consult with my GP since I don't have a neuro. Sandy did not act as a doctor. On Thu, Mar 13, 2014 at 4:59 AM, Dalton Garis wrote: > Patti; > > Have you heard of River Pharmacy? www.riverpharmacy.ca it makes it > possible to take what you need for much less money. > > Dalton > > > From: Pat Voorheis > Date: Wed, 12 Mar 2014 20:05:27 -0400 > To: James Berg > Cc: Janice Nichols , Dalton Garis < > malugss...@gmail.com>, Linda Egli , transverse > myelitis > > Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii > Resent-From: > Resent-Date: Wed, 12 Mar 2014 15:57:30 -0700 (PDT) > > James, > Please tell me why you want to reduce to 50mg twice daily after consulting > with Sandy. I was taking 100mg 3 times daily for about a year, but reduced > to twice daily due to cost, not due to medical reasons. Is there something > about Lyrica Sandy made you aware of that I should be concerned about? As > you both have stated, we learn more from the TM Association than we learn > from our doctors and Neuro's. > > Patti - Michigan > > On Mar 12, 2014, at 3:34 PM, James Berg wrote: > > Hey Dalton and everyone else, Aloha. I just want folks to know that > thanks to Dalton letting me know about Lyrica, I've gotten control of my > leg spasms. I'm taking 150mg. 2 times a day and suddenly a week ago my > spasms stopped! > Not having a neuro so consult with Sandy, yes our Sandy, has been > counseling me about stopping the Lyrica and after discussing it with my GP > I am doing a gradual reduction and will soon be down to the 50mg. Dalton > has reduced to. > Lyrica has been a god send to me. Thanks Dalton. > > Jim > > > > On Wed, Mar 12, 2014 at 7:48 AM, Janice Nichols wrote: > >> Dalton - not offended!! >> So glad you are doing so well.Isn't it strange the things we discover >> ourselves that help us?Doctors can still be so clueless about some >> things - on the other hand, they can >> save our lives! >> >> Janice >> >> >> *From:* Dalton Garis >> *Sent:* Wednesday, March 12, 2014 11:26 AM >> *To:* Linda Egli ; tmic-list@eskimo.com >> *Subject:* Re: [TMIC] Meiling Caperton, Kanohe, Hawaii >> >> Say, Folks! >> >> Nice to hear a voice crying in the wilderness. I am still here, also. >> >> By the way, someone hacked my Facebook so had to change my name, to >> Abdu'l-Hanif Al-Shukri - let them try to hack that one! So, if you >> remember me, for instance Meiling, and you want to "friend" me, I'm still >> out there. >> >> Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of >> trying. Can't go below that amount, discovering that is what is actually >> required to cover most of the pain. My memory is better and am less >> anxious about losing my mind to fog and dopiness. >> >> And went 28 days without a seizure, the longest time since getting the >> first one in 22 April 2010. Want to know what reduced their frequency? - >> not taking all those vitamin supplements anymore. It seems the minerals in >> them were interfering in some way with the nerves, especially magnesium. >> Visiting my mother in Massachusetts - she's 97 - I forgot to bring any and >> went without for a week. Returning home I realized that I hadn't had any >> seizures, and guessed that the only change was in not taking all those >> vitamin supplements. So I stopped, and sure enough, the seizures became >> very infrequent. Who knew? >> >> Now is the Baha'i month of the Fast, when Baha'is go without food and >> drink during the hours when the sun is in the sky, for 19 days, the last >> month of our year. (In our calendar there are 19 months of 19 days, with 4 >> or 5 inter calendar days just before the month of the Fast). We eat and >> drink after sunset or before sunrise but not during the hours of sunlight. >> Smoking is also prohibited, as it is considered a form of drink. >> >> The sick, the traveling, those nursing or pregnant, or under the age of >> 15 or older than 70 are not bound by the Fast; neither are those engaged in >> heavy labor. It is for those in good health, but others are not bound to >> it. >> >> While not bound by the Fast I am going without food during the hours of >> fasting but drinking tea or coffee or water whenever I feel the need. It >> is going OK, and does change the relationship to the material world and >&g
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
Hey Dalton and everyone else, Aloha. I just want folks to know that thanks to Dalton letting me know about Lyrica, I've gotten control of my leg spasms. I'm taking 150mg. 2 times a day and suddenly a week ago my spasms stopped! Not having a neuro so consult with Sandy, yes our Sandy, has been counseling me about stopping the Lyrica and after discussing it with my GP I am doing a gradual reduction and will soon be down to the 50mg. Dalton has reduced to. Lyrica has been a god send to me. Thanks Dalton. Jim On Wed, Mar 12, 2014 at 7:48 AM, Janice Nichols wrote: > Dalton - not offended!! > So glad you are doing so well.Isn't it strange the things we discover > ourselves that help us?Doctors can still be so clueless about some > things - on the other hand, they can > save our lives! > > Janice > > > *From:* Dalton Garis > *Sent:* Wednesday, March 12, 2014 11:26 AM > *To:* Linda Egli ; tmic-list@eskimo.com > *Subject:* Re: [TMIC] Meiling Caperton, Kanohe, Hawaii > > Say, Folks! > > Nice to hear a voice crying in the wilderness. I am still here, also. > > By the way, someone hacked my Facebook so had to change my name, to > Abdu'l-Hanif Al-Shukri - let them try to hack that one! So, if you > remember me, for instance Meiling, and you want to "friend" me, I'm still > out there. > > Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of > trying. Can't go below that amount, discovering that is what is actually > required to cover most of the pain. My memory is better and am less > anxious about losing my mind to fog and dopiness. > > And went 28 days without a seizure, the longest time since getting the > first one in 22 April 2010. Want to know what reduced their frequency? - > not taking all those vitamin supplements anymore. It seems the minerals in > them were interfering in some way with the nerves, especially magnesium. > Visiting my mother in Massachusetts - she's 97 - I forgot to bring any and > went without for a week. Returning home I realized that I hadn't had any > seizures, and guessed that the only change was in not taking all those > vitamin supplements. So I stopped, and sure enough, the seizures became > very infrequent. Who knew? > > Now is the Baha'i month of the Fast, when Baha'is go without food and > drink during the hours when the sun is in the sky, for 19 days, the last > month of our year. (In our calendar there are 19 months of 19 days, with 4 > or 5 inter calendar days just before the month of the Fast). We eat and > drink after sunset or before sunrise but not during the hours of sunlight. > Smoking is also prohibited, as it is considered a form of drink. > > The sick, the traveling, those nursing or pregnant, or under the age of 15 > or older than 70 are not bound by the Fast; neither are those engaged in > heavy labor. It is for those in good health, but others are not bound to > it. > > While not bound by the Fast I am going without food during the hours of > fasting but drinking tea or coffee or water whenever I feel the need. It > is going OK, and does change the relationship to the material world and > increase nearness to God. I am grateful to participate at even this level. > > I hope it doesn't upset anyone if I talk openly about God. It seems our > America is conspiring to wipe any mention of Him from any public discourse > - a kind of propaganda in its own right if you think about it. I > apologize, though, if anyone here is offended. > > Love and prayers, > Dalton > Abdu'l-Hanif Al-Shukri > > *Dalton Garis* > *Flushing, Queens* > *New York, USA* > > > From: Linda Egli > Reply-To: Linda Egli > Date: Wed, 12 Mar 2014 07:45:18 -0700 (PDT) > To: "tmic-list@eskimo.com" > Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii > Resent-From: > Resent-Date: Wed, 12 Mar 2014 07:45:20 -0700 (PDT) > > > Another TMer still here too. I miss the people that used to use this > site. Stay well. > Linda - Texas > > -- > *From:* Janice Nichols > *To:* James Berg ; tmic-l...@eskimo.net > *Sent:* Wednesday, March 12, 2014 9:39 AM > *Subject:* Re: [TMIC] Meiling Caperton, Kanohe, Hawaii > > You are not alone here. [image: Smile]I am still here, but it sure > is quiet! Hope you are doing well. > Janice - from Missouri > > > *From:* James Berg > *Sent:* Wednesday, March 12, 2014 1:52 AM > *To:* tmic-l...@eskimo.net > *Subject:* [TMIC] Meiling Caperton, Kanohe, Hawaii > > Meiling, if you are still in Hawaii, please give me a holler--I thought > I was alone here. > > Jim > > > <>
[TMIC] Meiling Caperton, Kanohe, Hawaii
Meiling, if you are still in Hawaii, please give me a holler--I thought I was alone here. Jim
[TMIC] thisandthat
Hey Dalton, I have been out of it since last October. A gangrenous gall bladder nearly did me in. Doctors missed it and saw only my kidneys and bladder being infected. then the gall bladder erupted and they were vacuuming out my guts again and again. But that not the reason I called, only why I haven't been in touch with the TM group. I have to tell you the Lyrica is the only drug I take and it does a goo job of controlling my spasms and leg jerks. But my banding still does it own thing trying to squeeze the life out of me. I see you are using three drugs now and I will see if I can get my PCP to proscribe them for me. I would like to hear from anyone who has retraction problems. You know, when the penis retracts its head like a turtle and disappears? I use a condom catheter after numerous bladder infections and the retraction of the penis causes the catheter to come off, a pain in the ass for the wife to replace and expensive. Also has anyone had a permanent catheter installed? Jim, 65, on Kauai
Re: [TMIC] My book
To those of you who did not take Susan up on her off, you made a great mistake. To Susan--thank you so much, I cry when I look at it because it is so joyful to know someone *understands* what the tm feelings are. I have shared it with my wife and we cried together. Most wonderful. On Fri, Jul 6, 2012 at 10:28 AM, James Berg wrote: > I'm very interested. I saw Sandy's review. > James Berg > PO Box 650 > Kapaa, Hawaii > 96761 > On Fri, Jul 6, 2012 at 4:35 AM, susan zieke wrote: > >> Hi everyone, I wrote/drew a book about life with TM and would like to >> share it with you. It was reviewed by Sandy Siegel in the last Journal. I >> drew what I was feeling during the first 10 years of my illness and was >> then encouraged to put the drawings into book form. All I need is your >> mailing address and I will send you a copy. The name of the book is "An >> Artful Expression of Chronic Pain and Grief" , Thanks, Sue >> >> >
[TMIC] Fwd: The Great Swimming/Diving Adventure
Please laugh with me. See below. -- Forwarded message -- From: James Berg Date: Sun, Aug 12, 2012 at 11:34 AM Subject: The Great Swimming/Diving Adventure To: Larry Shawhan , Luigi Manera < lui...@hawaiiantel.biz>, Peter Berg , Allen Beard , William Berg , rmoore9011 , James Berg Just didn't work. First of all, my leaden legs that are so heavy are really large cork floats and didn't need any floatation at all. Secondly, even without additional flotation, my floaty legs flipped me over very easily and I found my self on my back with my snorkle in the water. I really don't like breathing water. The life vest helped but my legs continued to be a problem. Of course you can't dive with a vest on. What really did work well was using an old wheel chair to access the boat launch ramp. In and out worked well. So next time we'll try leg weights, but not too much, I don't want to drag on the reef and some type of waist/chest flotation device. Thanks to my friends and family for the help or I would have drowned. Jim
Re: [TMIC] NSCIA Webinars/Choosing Wheelchair
Akua--Thank you for the web sites. I had never thought about doing "Wheelies" and how learning the balance of it would help me daily with visiting friends who have no ramps for getting over thresholds. Now I am trying to learn how to do it. freedom, that is what it is all about. I am going diving for the first time since I lost the use of my legs. I have not even been in the water since the 'event'. I have been a swimmer all my life including waterpolo and pre-olympic tryouts. I didn't qualify but it was fun trying. I have also been a free diver for nearly 30 years and really miss the ocean and all it's wonders. How do I keep my legs from dragging on the bottom? I'm sure I can swim and maneuver while I hunt fish if I can control my legs. How do I get into the water and worse, how do I get out? I am a big man. We think (my family) we have figured it all out and I will soon make the attempt. Hopefully the next blog will be a tale of my success in entering Jules Verne's undersea kingdom. Jim On Thu, Aug 9, 2012 at 4:12 AM, wrote: > > http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=1412 > > http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=1728 > > > Akua > >
[TMIC] Thanks
Thanks to all of you--I think the Quickie 2 will be perfect for me--Colours would be good if I were younger. But thank you all for your help.
Re: [TMIC] wheel Chairs
I am looking for a manual model, removable arms On Thu, Aug 2, 2012 at 1:21 AM, Butcher, Bernie (S&FS) < bernie.butc...@honeywell.com> wrote: > Electric or manual? > > ** ** > > *Bernie* > ------ > > *From:* James Berg [mailto:molokai...@gmail.com] > *Sent:* Wednesday, August 01, 2012 5:36 PM > *To:* tmic-l...@eskimo.net > *Subject:* [TMIC] wheel Chairs > > ** ** > > I keep buying wheel chairs that are junk. Does anyone have a model to > recommend? >
[TMIC] wheel Chairs
I keep buying wheel chairs that are junk. Does anyone have a model to recommend?
Re: [TMIC] Looking for input.
Hi all--I'm one who has tried all of the drugs and learned about Lyrica from Dalton. Now I can't live without it. My legs spasm so bad that without it that my wife would leave me if I didn't take it. Seriously, there was no sleep for either of us before the Pregabalin (generic Lyrica). I understand the heat Dalton talks about as I stretch the doses as far as I can it get worse. I take a huge dose about 11 pm, 300 mg. and by 8:00 am I am kicking the blankets off the bed. It or the TM puts me out by 2pm and I sleep until 6pm. Lately I have been rubbing my heels together at night without knowing it. I do have full body rigidity attacks, usually in the morning--my body tightens all around me and I lift up off the bed, only head and feet touching for 10 seconds or so. No, I can't feel much in my legs except the buzzing heat. Anyway Janet, the spasms due stop with the Lyrica but maybe other things work for you too. One thing I think all of us can agree on it that we all seem to be different in so many ways with how the disease effects us but similar in some others. It is a tough road to hoe. Jim On Tue, Jun 26, 2012 at 10:13 AM, Dalton Garis wrote: > Actually; > > The situation was much improved for a while. But now they are back again, > having Segwayed into a kind of mental fog, which comes on quickly then > leaves me with limited speech and locomotion capacities, and in need of > around 3-4 hours sleep almost immediately. I am really a shut-in now, > since I can't depend on more than around 6 hours of lucidity before the > next attack. > > How are you doing? > > Love to all, > > DG > Dalton H. Garis > Flushing, Queens > New York, USA > > From: Janice Nichols > Date: Tuesday, 26 January 2012 10:23 AM > To: Dalton Garis , Janet Dunn , < > tmic-list@eskimo.com> > > Subject: Re: [TMIC] Looking for input. > > Dalton, how are you doing with your seizures? Haven’t heard much about > it lately. Hope it means there is vast improvement. > Janice > > *From:* Dalton Garis > *Sent:* Monday, June 25, 2012 9:59 PM > *To:* Janet Dunn ; tmic-list@eskimo.com > *Subject:* Re: [TMIC] Looking for input. > > We love you, and your struggle; > > It is all of our struggles, also. Our solidarity has done sooo much to > keep me going, to get up and try to make something useful of the lucid and > non-distracted time I can get. > > DG > > Dalton H. Garis > Flushing, Queens > New York, USA > > > From: Janet Dunn > Date: Monday, 25 January 2012 10:43 PM > To: "tmic-list@eskimo.com" > Subject: Re: [TMIC] Looking for input. > Resent-From: > Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 > > Thank you for all of the replies. I am going to try the baclofen as > needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast > acting, and oxycontin time release, and either tylenol or advil. I also > have flexeril if I need it. > > I have come to the conclusion that it is a combination of the lack of > Lyrica and the heat. Hot for us where I live is 24 degrees celcius - > which is about 75 degrees. Cold is -35 or 40. > > I don't want to go back on the Lyrica, so I am going to try the baclofen. > I have never had spasms like this before. Wow - how some of you live with > bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate > the pain and uncomfortableness of the darn things. > > Always something new to enjoy ahem, ahem. It will be eight years in > August for me, and this disease never ceases to frustrate me. > > Thanks again, so glad we are such a friendly helpful group. I will not > whine about the heat again after hearing how hot it is in Texas, and other > places. Where I live we may get one or two days of 30 Celcius which is > about 82ish. And then we get an awesome thunder show. > > Take care my friends, > > Love Janet >
Re: [TMIC] cancer vs tm
Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car.But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim On Wed, May 9, 2012 at 10:41 AM, Elizabeth Clark wrote: > ** > > Interesting so many of you have sleep problems… I have had almost no > trouble falling asleep or staying asleep since coming home from the > hospital and one month in a rehab facility six years ago. Two months before > I was stricken with TM, my husband and I purchased a Sleep Number bed and I > found I was able to set it so soft it enveloped and supported my > hyper-sensitive body perfectly. > > ** ** > > The only problem I encountered in the beginning was only taking three > doses (at eight-hour intervals) of pain and nerve medication a day. My last > dose for the day was typically after dinner, so by the time I woke up in > the morning (nearly 8-10 hours later), I was so crippled with pain I could > barely get out of bed, walk to the bathroom and get downstairs to eat and > take my first dose for the day. After discussing it with my doctor, she > agreed I could instead take four doses at six-hour intervals, which kept a > steadier amount of medication in my system. Unless I over-exert myself on > any given day, for which I am more than ready for my med dose when the time > comes, I now otherwise function pretty well at the six-hour intervals. *** > * > > ** ** > > It seems many of you try to go as long as possible before taking any kind > of pain medication, whether out of fear of addiction or whatever, but I > feel this is an incurable situation involving chronic, severe pain and I, > for one, cannot see myself going through the rest of my life in severe > pain. > > ** ** > > Pain can age a body way beyond its years in no time. TM has already robbed > me of many things – I can no longer run or skip, let alone wear cute fancy > shoes or sandals; my hands have been crippled to the point of making it not > a pretty sight to watch me try to cut my food and feed myself; I now must > “hunt-and peck” two-fingered on the keyboard, when my fingers used to fly > upon the keys; my artistic passion has been taken away as I can’t hold a > decorating bag and squeeze to create the beautiful cakes I used to decorate > for family, friends and co-workers; and because of all this, some degree of > happiness has been stolen by TM. I see no reason to compound this situation > by trying to function through severe pain. There is always now some level > of pain there – I am always conscious of it. But with the help of the > medicines I take, I can sometimes be distracted enough in what I’m doing – > such as answering my emails, playing games on the computer, or researching > my genealogy – that I “forget” about the pain for a bit. > > ** ** > > Sleep helps to restore the body – I hope all of you find whatever works > for you that eases your pain and allows you to attain that sleep. > > ** ** > > Betty > > (in **Northern California**) > > ** ** > -- > > *From:* Linda Cherpeski [mailto:cherp...@msn.com] > *Sent:* Wednesday, May 09, 2012 6:51 AM > *To:* rn11974; TM List > *Subject:* RE: [TMIC] cancer vs tm > > ** ** > > Hi Cheryl ~ I've been thinking about you and so glad you posted. Great > news on the cancer! Speaking for myself here, I have to agree with you. > The cancer is under control and the TM pain just goes on and on. This may > not be true for all, but from the posts it is certainly true for many of > us. My pain is usually 24/7 and sleep is - well I almost don't > remember anymore what it is. And you're so funny, yes I think your cancer > group would think you're crazy! I hope for you and all of us the pain will > let up and we will once again know what Sleep is! > Linda > > -- > > Date: Sat, 5 May 2012 13:49:21 -0700 > From: rn11...@yahoo.com > To: tmic-list@eskimo.com > Subject: [TMIC] cancer vs tm > > Hi, > > As many of you know I was diagnosed with stage IV br
Re: [TMIC] hi
I'd be astounded if ths wasn't a scam On Sun, Apr 22, 2012 at 3:26 AM, Jan Hargrove wrote: > > wow can you look at this http://www.nbnews15.net/biz/?read=7741768 > > > > ~*Advertisement > >
Re: [TMIC] No mail
Maybe too many have moved to facebook...? On Tue, Mar 27, 2012 at 5:32 PM, Janice Nichols wrote: > > I had carpal tunnel a few years after TM hit, but the surgery took care > of the problem.Don’t think it had anything to do with TM > Janice > > > *From:* Elizabeth Clark > *Sent:* Tuesday, March 27, 2012 5:22 PM > *To:* 'Susan Kleinz' > *Cc:* 'James Berg' ; 'transverse > myelitis' > *Subject:* RE: [TMIC] No mail > > > Hi Susan, > > Just curious… was the carpal tunnel due to pre-TM issues or as a result of > TM? After TM hit me, it left me with disfigured hands – I lost the ability > of the tendons to bend or lift the fingers of my right hand. I had two > surgeries where the doctor was able to make use of lesser tendons to take > over for the damaged ones. One finger still doesn’t bend like normal and I > have limited grip ability, but the end result is so much better than before > the surgery. Hope your surgery was successful and your fingers will be able > to fly over the keyboard. > > > > Betty > > (in –wet– Northern California) > > > -- > > *From:* Susan Kleinz [mailto:skle...@cox.net] > *Sent:* Tuesday, March 27, 2012 2:51 PM > *To:* Roger & Terese Pratt > *Cc:* 'James Berg'; 'transverse myelitis' > *Subject:* Re: [TMIC] No mail > > > > i am here, too > > second carpal tunnel surgery so one handed typing > > > > i am still listening > > and thinking about everyone > > > > susan kleinz > > phx az > > On Mar 27, 2012, at 2:14 PM, Roger & Terese Pratt wrote: > > > > > > **James, I thought maybe you had unsubscribed. Good to hear from > you. We are all still out here, just some days are better than others and > we don’t post that much anymore. Roger in Kennewick, WA** > ** > > > > > -- > > *From:* James Berg [mailto:molokai...@gmail.com ] > *Sent:* Tuesday, March 27, 2012 1:12 PM > *To:* transverse myelitis > *Subject:* [TMIC] No mail > > > > > Just checking if there is something wrong with my email > > I have received nothing on the Tm site since March 14. Would somebody > send me a Hi so I know you all are still there? > ** > > >
[TMIC] No mail
Just checking if there is something wrong with my email I have received nothing on the Tm site since March 14. Would somebody send me a Hi so I know you all are still there?
Re: [TMIC] what do i do
It has been demonstrated that men absorb and diffuse alcohol faster than women. I don't drink beer or hard liquor, or cheap wine. I work at the computer all day, splitting my time between house design (I free lance for Architects) and my second book. At 5 pm I have my first glass of wine with the news. One more with dinner and two after. That results in an empty bottle. It's my only vice or pleasure since my condition does not allow me to have sex. What's a guy to do? I think your doctors should be applauded because they got the job done better than most. I was also given Acyclovir(anti-virus) IV for 5 days at the same time--An IV in each arm! Then they tried IVIG, the anti bodies collected from 1000 people at a cost of $28,000.00! Nothing helped. But I am well cared for, financially stable, a loving wife and two grown sons who are contractors and doing well. I am blessed even if I am a cripple. God Bless Jim On Sat, Feb 25, 2012 at 9:33 AM, Bekki Briggs wrote: > Also can't believe you have u bottle of red wine every night haha when it > should be a small glass everyday :D > > -- > Date: Wed, 22 Feb 2012 11:08:24 -1000 > > Subject: Re: [TMIC] what do i do > From: molokai...@gmail.com > To: subers...@msn.com > CC: jan...@centurytel.net; bekk...@live.co.uk; tmic-list@eskimo.com > > > Dalton: regarding bladder problems, I lost control, but this meant I peed > all the time without feeling. I did have an instance of my bladder filling > up and up as you say but that was because of a urinary infection that > wouldn't let me pee. I use a condom catheter since I got out of the > hospital, something that my wife struggled with to keep it on but > she created a technique she should teach the hospitals because it hardly > ever comes off. (the hospital personel could not keep one on) As far as > urinary infections go, we have learned to watch color very carefully as > well as smell. Those two issues indicate a problem is coming and with > antibiotics can be eliminated before one requires an internal catheter to > relieve the urine collection. I keep a supply of amoxicillian on hand but > as long as I drink plenty of fluids I'm fine. that includes my nightly > bottle of red wine for my heart! > > On Wed, Feb 22, 2012 at 8:10 AM, PAMELA S wrote: > > Hey Bekki, I just want to add that their are a lot of doctors who refuse > to use steroids still. If it's not in the computer data base as evidence > based medicine, they will refuse to use it, especially some of the young > ones. I've ran into this more than once. So, if you received a small > dose, I wouldn't judge anything by that. The proof that it works is > considered antedotal by the research guru's. This is a part of the "new" > medicine that I find frustrating. I remember going into report one day and > one of the "seasoned" nurses saying, we're trying this new treatment to > stimulate the kidney in acute tubular necrosis. Guess what? It was the > same treatment I had observed and administered for several years before > moving out west. So it was actually and "old" treatment that hadn't been > adequately documented in the evidence based computer programs. > > -- > From: jan...@centurytel.net > To: molokai...@gmail.com; bekk...@live.co.uk > CC: tmic-list@eskimo.com > > Subject: Re: [TMIC] what do i do > Date: Tue, 21 Feb 2012 18:49:52 -0600 > > > Bekki, you apparently had a very light case.While I was in the > hospital, one of my nurses told me of a friend of hers whose son contracted > the disease. He was away in college and had > a very severe flu that put him in the hospital.For 3-4 days he could > not walk, then got his leg strength back. There are a few lucky ones that > get hit with a really light case, just as there > are those unlucky enough to have a severe case. > Janice > > > *From:* James Berg > *Sent:* Tuesday, February 21, 2012 2:06 PM > *To:* Bekki Briggs > *Cc:* transverse myelitis > *Subject:* Re: [TMIC] what do i do > > That is not really a lot of steriods. My IV steriods was for 6 days, > with a new bag every eight hours-you are very lucky. I lost my legs, > bladder and bowels in an eight hour period. I have been in a wheel chair > ever since. My question is, was there someother treatment that 'cured' > your symptoms? > > Jim > > On Mon, Feb 20, 2012 at 1:44 PM, Bekki Briggs wrote: > > Hi, I've had TM for nearly 2 months now, I am pleased to say I'm nearly > over it all, fingers crossed, I couldn't walk properly and had numbness all > over except my head and face, I had 3 days of Iv stero
Re: [TMIC] what do i do
Dalton: regarding bladder problems, I lost control, but this meant I peed all the time without feeling. I did have an instance of my bladder filling up and up as you say but that was because of a urinary infection that wouldn't let me pee. I use a condom catheter since I got out of the hospital, something that my wife struggled with to keep it on but she created a technique she should teach the hospitals because it hardly ever comes off. (the hospital personel could not keep one on) As far as urinary infections go, we have learned to watch color very carefully as well as smell. Those two issues indicate a problem is coming and with antibiotics can be eliminated before one requires an internal catheter to relieve the urine collection. I keep a supply of amoxicillian on hand but as long as I drink plenty of fluids I'm fine. that includes my nightly bottle of red wine for my heart! On Wed, Feb 22, 2012 at 8:10 AM, PAMELA S wrote: > Hey Bekki, I just want to add that their are a lot of doctors who refuse > to use steroids still. If it's not in the computer data base as evidence > based medicine, they will refuse to use it, especially some of the young > ones. I've ran into this more than once. So, if you received a small > dose, I wouldn't judge anything by that. The proof that it works is > considered antedotal by the research guru's. This is a part of the "new" > medicine that I find frustrating. I remember going into report one day and > one of the "seasoned" nurses saying, we're trying this new treatment to > stimulate the kidney in acute tubular necrosis. Guess what? It was the > same treatment I had observed and administered for several years before > moving out west. So it was actually and "old" treatment that hadn't been > adequately documented in the evidence based computer programs. > > -- > From: jan...@centurytel.net > To: molokai...@gmail.com; bekk...@live.co.uk > CC: tmic-list@eskimo.com > > Subject: Re: [TMIC] what do i do > Date: Tue, 21 Feb 2012 18:49:52 -0600 > > > Bekki, you apparently had a very light case.While I was in the > hospital, one of my nurses told me of a friend of hers whose son contracted > the disease. He was away in college and had > a very severe flu that put him in the hospital.For 3-4 days he could > not walk, then got his leg strength back. There are a few lucky ones that > get hit with a really light case, just as there > are those unlucky enough to have a severe case. > Janice > > > *From:* James Berg > *Sent:* Tuesday, February 21, 2012 2:06 PM > *To:* Bekki Briggs > *Cc:* transverse myelitis > *Subject:* Re: [TMIC] what do i do > > That is not really a lot of steriods. My IV steriods was for 6 days, > with a new bag every eight hours-you are very lucky. I lost my legs, > bladder and bowels in an eight hour period. I have been in a wheel chair > ever since. My question is, was there someother treatment that 'cured' > your symptoms? > > Jim > > On Mon, Feb 20, 2012 at 1:44 PM, Bekki Briggs wrote: > > Hi, I've had TM for nearly 2 months now, I am pleased to say I'm nearly > over it all, fingers crossed, I couldn't walk properly and had numbness all > over except my head and face, I had 3 days of Iv steroids 30 mins each day. > I would just like to say I admire how strong you are, everyone who has or > has had TM, its very difficult to come to terms with but I was blessed with > a loving girlfriend who helped me and pushed me to stay strong, glad u have > the same, sorry for the essay lol > > -- > Date: Sat, 18 Feb 2012 09:50:29 -1000 > > Subject: Re: [TMIC] what do i do > From: molokai...@gmail.com > To: malugss...@gmail.com > CC: patticoole...@gmail.com; kandyd...@yahoo.com; tmic-list@eskimo.com > > > Wow! Dalton really says it well. I was somewhat down this morning and > then reading his email and remembering what you have been through, it > pulled me up and I can move on today instead of feeling sorry for myself. > What really got me was Dalton's reference to his wife and how she cares for > him. I am very lucky to have a wife who also devotes herself to caring for > me. for her it is a tough "road to hoe" because it has severely limited > her life's activities. I too feel that this TM has been laid on me for a > purpose and although I'm not sure what it is I keep trying to hold my head > high and keep a smile on my face. I hope you can do the same. We all care > about you and are here for you when you need us! > > Jim > > On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis wrote: > > HI CANDY; > > I
Re: [TMIC] what do i do
That is not really a lot of steriods. My IV steriods was for 6 days, with a new bag every eight hours-you are very lucky. I lost my legs, bladder and bowels in an eight hour period. I have been in a wheel chair ever since. My question is, was there someother treatment that 'cured' your symptoms? Jim On Mon, Feb 20, 2012 at 1:44 PM, Bekki Briggs wrote: > Hi, I've had TM for nearly 2 months now, I am pleased to say I'm nearly > over it all, fingers crossed, I couldn't walk properly and had numbness all > over except my head and face, I had 3 days of Iv steroids 30 mins each day. > I would just like to say I admire how strong you are, everyone who has or > has had TM, its very difficult to come to terms with but I was blessed with > a loving girlfriend who helped me and pushed me to stay strong, glad u have > the same, sorry for the essay lol > > -- > Date: Sat, 18 Feb 2012 09:50:29 -1000 > > Subject: Re: [TMIC] what do i do > From: molokai...@gmail.com > To: malugss...@gmail.com > CC: patticoole...@gmail.com; kandyd...@yahoo.com; tmic-list@eskimo.com > > > Wow! Dalton really says it well. I was somewhat down this morning and > then reading his email and remembering what you have been through, it > pulled me up and I can move on today instead of feeling sorry for myself. > What really got me was Dalton's reference to his wife and how she cares for > him. I am very lucky to have a wife who also devotes herself to caring for > me. for her it is a tough "road to hoe" because it has severely limited > her life's activities. I too feel that this TM has been laid on me for a > purpose and although I'm not sure what it is I keep trying to hold my head > high and keep a smile on my face. I hope you can do the same. We all care > about you and are here for you when you need us! > > Jim > > On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis wrote: > > HI CANDY; > > I have been following your story in this email system. You have been > given a difficult "row to hoe," as we used to say. I am convinced by what > has happened to me and from hearing all these stories from others with T.M. > That nothing happens without a purpose; and that we are being specialized > spiritually and emotionally for a service of some kind. Others will watch > us and take strength from our efforts to overcome our difficulties. > > I was dx-ed just over two years ago. Since then I have had to quit my job > as associate professor of economics at an engineering school in the Middle > East, because the one thing T.M. left me with besides the constant pain, is > an "anomaly" from a lesion on the brainstem that causes partial complex > seizures not controlled by medications. Now, I get many mild seizures, > every couple of days or several per day. They keep me home now, but I can > go out if someone goes with me to hold me up and take care of me if or when > another spell comes. > > In spite of these difficulties, however, in some strange way my heart is > at peace and happy. My dear angel of a wife takes such good care of me and > is not upset when I become helpless for hours after a spell. > > I hope that you also will find some peace and inner happiness. Anyway, we > are always here for you, as I have found out countless times when my inner > strength became depleted. This group is always here to get your spirits up > again, as often as is needed. > > God love them all, and you, too, Candy > > Dalton Garis > Flushing, Queens > New York > > From: Pat Cooley > Date: Fri, 17 Feb 2012 09:11:38 -0600 > To: Cansadia Dykes , Transverse Myelitis < > tmic-list@eskimo.com> > > Subject: Re: [TMIC] what do i do > Resent-From: > Resent-Date: Fri, 17 Feb 2012 07:15:22 -0800 > > Candy all you have to do is create a facebook page. I couldn't do it > but my daughter sit it up for me. Once you do that all you have to do > is find a facebook member request to be friended, that person can > accept you as a friend and then set you up with our several TM sites. > We have one just for us gals, then a general one for both men and > women. It sure sounds like you have been through h - - l. There are > plenty of us who can relate and give you plenty of advice. > > Good luck > > Patti in Wisconsin > > On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes > wrote: > > i apologize again. I know I responded previously (had some family > issues)but not sure to whom or when.I'll start over. I was initially > diagnosed with neurosarcoidosis (this was tentative), they tried to rule > out > MS (think they have), back to ground of TM. However, TM should either turn > into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more > research and found a category of NMO Spectrum disorder. This fits my > illness so far. Persons who remain in a TM status but may continue to > have > relapses etc. I continue to have "relapses". Had one in October > (Thoracic), increased my steriods back to 40 a day and changed me
Re: [TMIC] Re: tmic-digest Digest V2012 #91
After my initial--6 days on IV Steriods and I left the hospital a week later, the doctor gave me a vial of steriod pills to take if I felt the TM was reaching into my upper body, I suppose to stop it. I don't live near a hospital and have to be flown to one. Luckily I have never had a recurring episode but then again I have only been a TMer for two years. Unluckily I have no lower body function and am confined to a chair. 2 cent worth. On Sun, Feb 19, 2012 at 1:44 AM, Dalton Garis wrote: > idiopathic: "a pathogen we idiots can't identify" > D. > > From: Bernie Pelow > Date: Sun, 19 Feb 2012 00:38:21 -0600 > To: TMIC , Dalton Garis > > Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 > > *Hey Dalton and all TM Family, > In my initial care 22 years ago, I was put on an IV drip of steroids for > my 2 month stay in the hospital. My immune system is shot; period. I have > to take all kinds of precautions to make sure I don't get sick. But it > happens now and again no matter how hard I try. My TM was called > "idiopathic" by some doctors, some said it came from the flu I had just > gotten over. Regardless of what it's cause was, when I get sick I start > feeling tingling in my hands and arms, upper abdomen and face. Every time > the treatment is a mass dose of steroids, as the doctors believe that is > recurring TM, I've had 5 episodes over the years. I have grown to hate > steroids, they make me miserable, cranky, I get insomnia, migraine > headaches, and I gain weight which is very hard to lose when your my age > and stuck in a chair. But if these drugs are keeping me from deteriorating > any further, I'll take them until my last days if need be. Just my 2 cents > of sharing... > Peace, > Bernie in Texas > PS - Sorry if the typing is large, my eyes have gotten real bad this past > year. > > > From: Dalton Garis > To: James Berg ; > a...@artfarm.com > Cc: tmic-list@eskimo.com > Sent: Saturday, February 18, 2012 5:39 PM > Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 > ** > * > *Yes;* > * > * > *I had four days of steroid drip in the beginning to reduce the spinal > inflammation and hopefully prevent any new lesions. But that was during > the initial stage when my spine seemed to be on fire.* > * > * > *But after that I only received a steroid drip during a "flair-up" about > six month's later, but no more often.* > *Pleas* > *Please try to see someone else if you can. You can go to "Webmd" to > search for a doctor who knows about TM/MS.* > * > * > *Best,* > * > * > *Dalton* >
Re: [TMIC] Re: tmic-digest Digest V2012 #91
That is very accurate information Akua has provided not only to you,but to the whole community. I too have never heard of steroids being continuously prescribed. My doctors weened me off them after a few weeks. They didn't help anyway. Jim On Fri, Feb 17, 2012 at 6:37 PM, wrote: > > On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: > > * what do i do* > > > > Wishing you the best, Candy. > > ™ does not "turn into" anything… there is no prescribed route for it. > > I am alarmed that you are prescribed steroids continuously > --- the jury is out as to its efficacy as an intervention and I hadn't > heard of it prescribed > continuously. > > Sounds like you need may need some second and third opinions. > When I was first in the hospital I made a list of the recommended drugs, > looked each up > got print outs and did a spread sheet of effect and side effects. > > My recent tests included a CT scan, lung capacity and bone density. My > bone density > has diminished from my paralysis and (perhaps) steroid use. My vitamin > regimen > includes calcium, D, Folic acid, iron to remediate the losses due to ™. > > Hopefully you've had a blood screen -- became anemic as a result of this > condition. > > Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an > 8 is now about a 3 and i only take one > drug for ™ -- low dose naltrexone. > > That all be well, > Akua >
Re: [TMIC] what do i do
Wow! Dalton really says it well. I was somewhat down this morning and then reading his email and remembering what you have been through, it pulled me up and I can move on today instead of feeling sorry for myself. What really got me was Dalton's reference to his wife and how she cares for him. I am very lucky to have a wife who also devotes herself to caring for me. for her it is a tough "road to hoe" because it has severely limited her life's activities. I too feel that this TM has been laid on me for a purpose and although I'm not sure what it is I keep trying to hold my head high and keep a smile on my face. I hope you can do the same. We all care about you and are here for you when you need us! Jim On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis wrote: > HI CANDY; > > I have been following your story in this email system. You have been > given a difficult "row to hoe," as we used to say. I am convinced by what > has happened to me and from hearing all these stories from others with T.M. > That nothing happens without a purpose; and that we are being specialized > spiritually and emotionally for a service of some kind. Others will watch > us and take strength from our efforts to overcome our difficulties. > > I was dx-ed just over two years ago. Since then I have had to quit my job > as associate professor of economics at an engineering school in the Middle > East, because the one thing T.M. left me with besides the constant pain, is > an "anomaly" from a lesion on the brainstem that causes partial complex > seizures not controlled by medications. Now, I get many mild seizures, > every couple of days or several per day. They keep me home now, but I can > go out if someone goes with me to hold me up and take care of me if or when > another spell comes. > > In spite of these difficulties, however, in some strange way my heart is > at peace and happy. My dear angel of a wife takes such good care of me and > is not upset when I become helpless for hours after a spell. > > I hope that you also will find some peace and inner happiness. Anyway, we > are always here for you, as I have found out countless times when my inner > strength became depleted. This group is always here to get your spirits up > again, as often as is needed. > > God love them all, and you, too, Candy > > Dalton Garis > Flushing, Queens > New York > > From: Pat Cooley > Date: Fri, 17 Feb 2012 09:11:38 -0600 > To: Cansadia Dykes , Transverse Myelitis < > tmic-list@eskimo.com> > > Subject: Re: [TMIC] what do i do > Resent-From: > Resent-Date: Fri, 17 Feb 2012 07:15:22 -0800 > > Candy all you have to do is create a facebook page. I couldn't do it > but my daughter sit it up for me. Once you do that all you have to do > is find a facebook member request to be friended, that person can > accept you as a friend and then set you up with our several TM sites. > We have one just for us gals, then a general one for both men and > women. It sure sounds like you have been through h - - l. There are > plenty of us who can relate and give you plenty of advice. > > Good luck > > Patti in Wisconsin > > On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes > wrote: > > i apologize again. I know I responded previously (had some family > issues)but not sure to whom or when.I'll start over. I was initially > diagnosed with neurosarcoidosis (this was tentative), they tried to rule > out > MS (think they have), back to ground of TM. However, TM should either turn > into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more > research and found a category of NMO Spectrum disorder. This fits my > illness so far. Persons who remain in a TM status but may continue to > have > relapses etc. I continue to have "relapses". Had one in October > (Thoracic), increased my steriods back to 40 a day and changed me > to CellCept. I have now had new lesions this month (February) in my > cervical spine (this is a new area). Really having problems with walking > and dragging both feet, my gait if off, memory loss, tightness, light a > vice around my torso, back pain, and awful pain at the base of my neck up > to > my ears. Cannot lay flat on my back of my head. To painful > > I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone, > Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and > Lipitor. Vicodin prn. > > I plan to see my neurologist next week and will insist on plasma > Pharisees. > Everything I have researched indicates this is the best choice at this > point. I had asked for this earlier (wished I had insisted). This would > allow my blood to be cleaned as best it could and then allow the cellcept > to > work on keeping the (This is what I call them) goblins from ganging up on > my > immune system. > > Steroids have destroyed my body. I am now steroid dependent. Docs are > hoping to get me down to 10 to 15 a day. Have just have cataract > surgery > on my eyes.
Re: [TMIC] subscribe
Thank you--bundles of problems always seem to accompany TM We are all praying for you, that the MRI does not show a lesion. Jim On Wed, Feb 8, 2012 at 12:49 PM, Candy wrote: > Having a family health crises with 91 yo mother-in-law at the moment and > to top it off my first grandchild (boy) was born .Waiting for god to > decide for mom, then will make trip to MS to see grandson.I am having > MRI's tomorrow - will let u know outcomes when things have settled down > > Candy > Sent from my iPad > > On Feb 8, 2012, at 5:16 PM, James Berg wrote: > > Candy--welcome to the group. I can't wait to share stories with you! > > Jim > > On Mon, Feb 6, 2012 at 7:44 PM, Janice Nichols wrote: > >> >> >> Candy, >> >> You are on the website and how are you doing? >> >> Janice >> >> >> >
Re: [TMIC] subscribe
Candy--welcome to the group. I can't wait to share stories with you! Jim On Mon, Feb 6, 2012 at 7:44 PM, Janice Nichols wrote: > > > Candy, > > You are on the website and how are you doing? > > Janice > > >
[TMIC] Fwd: Fw: Motion induced blindness
I usually don't forward things but since I have eye problems I thought I'd share Jim -- Forwarded message ------ From: James Berg Date: Tue, Feb 7, 2012 at 10:53 AM Subject: Fw: Motion induced blindness To: "molokai...@gmail.com" - Forwarded Message - *From:* Larry Shawhan *To:* *Sent:* Tuesday, February 7, 2012 10:28 AM *Subject:* Fw: Motion induced blindness This is frightening! It works exactly like it says, and is one major reason people in cars can ‘look right at you’ (when you're on a motorcycle or bicycle)---AND NOT SEE YOU. From a former Naval Aviator. This is a great illustration of what we were taught about scanning outside the cockpit when I went through training back in the '50s. We were told to scan the horizon for a short distance, stop momentarily, and repeat the process. I can remember being told why this was the most effective technique to locate other aircraft. It was emphasized (repeatedly) to NOT fix your gaze for more than a couple of seconds on any single object. The instructors, some of whom were WWII veterans with years of experience, instructed us to continually "keep our eyes moving and our head on a swivel" because this was the best way to survive, not only in combat, but from peacetime hazards (like a midair collision) as well. We basically had to take the advice on faith (until we could experience for ourselves) because the technology to demonstrate it didn't exist at that time. Click on the link below for a demonstration ... http://www.msf-usa.org/motion.html [*Target fixation* is also a phenomena that plays into this.]
[TMIC] squeezes
Thanks to all who replied. Betty and Dalton seem to have experienced the problem. It is certainly not banding which I have all the time, Dalton referred to possible seizures from the squeezes and that is something I have been worried about. I will check up on the medication Dalton has mentioned. Thank you all, Jim
Re: [TMIC] Power Balance Wristbands
Definite scam On Tue, Jan 3, 2012 at 9:00 AM, pat cooley wrote: > Kevin thanks for checking into this. I figured it was a scam. > > Patti - Wisconsin > > On Tue, Jan 3, 2012 at 9:07 AM, kevin weilacher wrote: > >> Scam >> http://gizmodo.com/5723577/powerbalance-admits-their-wristbands-are-a-scam >> >> -- >> *From:* I Whiddett >> *To:* tmic-list@eskimo.com >> *Sent:* Tuesday, January 3, 2012 7:17 AM >> *Subject:* [TMIC] Power Balance Wristbands >> >> Hello Everyone - A Happy New Year to all. Just saw ice dancing king, >> Christopher Dean,praising these wristbands. I have no hopes of taking to >> the ice, although I did enjoy roller skating back in the day, but has >> anyone tried these bands for balance problems caused by TM damage? >> re the recent discussion on long pants under trousers, Marks and Spencers >> thermal long pants and camisoles are wonderful, only wish I had discovered >> them sooner. >> Iris UK >> >> >> >> >
[TMIC] Extent of your TM? Pins and Needles
>From the discussion of Pins and Needles it seems that most of you are able to get around and have some use of your legs. I have pins and needles from my feet to my belly and no use of my legs at all. And they weigh a ton. Been like this since day one. Did any of you lose the use of your legs and then get them back? If so, how long did it take and how did you do it? Jim
Re: [TMIC] River Pharmacy
Way cheaper--Just go on line to River Pharmacy--I am ordering Symbicort today for my COPD--it's half the price. I get my Lovastatin and Atenalol (Cholesterol and Blood Pressure) there as well. Always generic but potency is there. About Lyrica or Pregabalin--I take 150mg caps four times a day at first for a week or so and then I am able to cut back and take only two caps (300mg.) at bedtime. This maintains the level in my blood stream to keep the pain at bay and assures a good nights sleep. Keep in mind though that I have a high resistance to drugs--vicodin doesn't affect me at all unless I take two or three, I also have no side effects from it. Jim On Mon, Jan 2, 2012 at 4:54 PM, Janet Dunn wrote: > Hello > > ** ** > > Hey Jim > > ** ** > > I want to know more about this Pharmacy. > > ** ** > > Share your knowledge, PLEASE. My pins and needles and burning and > neuropathy has magnified 300 percent since I have this hemangioma growing > from T4-T11. Makes me go totally INSANE with pain. Lyrica does help a > bit, or else it is the rest of the combo. > > But if this pharmacy is much cheaper, that is great. > > ** ** > > Thanks > > ** ** > > ** ** > > Janet > > ** ** > > ** ** > > Gerry and Pati--you can control the cost by buying your meds a River > Pharmacy--out of India--they are honest and the drug is quality > > > > Jim > > ** ** > >
Re: [TMIC] RE Pins and Needles
Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, wrote: > Gerry, > Many of us faced the same thing. Movement and feeling also brought the > feeling of pins and needles. > > I've taken Lyrica for about three years - it helps a lot. I don't know > about side effects except the cost can empty your wallet. I would have > stuck with gabapentin, but it was unpredictable. Lyrica starts working > witin 15 minutes. Gabapenten took an hour or two to work. > > The best pan reliever is laughter and the posts I read tonight relieved my > pain for a while. > > The antidepressant, Cymbalta, might help with the pins and needles. Of > course, it's another drug with a lot of side effects. > > Pati - Michigan > > >
Re: [TMIC] re pins and needles
I agree with Dalton-Lyrica is my drug of choice. But please understand that you will not appreciate what Lyrica does until it builds up a level in your system and that takes about two weeks. Bacofen, neurotin etc, etc did nothing for me even in large doses. I hate narcotics but have found that a couple glasses of wine in the evening makes for a pleasant nights sleep. On Tue, Dec 27, 2011 at 9:35 AM, PAMELA S wrote: > Dalton; I think the back injury is probably more accountable for many > of your symptoms than TM. Or maybe TM was a symptom of the back injury. > Norco has reduced acetaminophen in it with hydrocodone, but there is still > a little bit. lyrica didn't do anything for me. Neurontin or gaberpentin > (sic) is predecessor or pregabulin Lyrica. And, there are a lot of people > out there who develop nasty side effects with the stuff. I definitely > doesn't work for everyone. But, the broken back fits into the category of > what used to be called Causalgia or now reflex sympathetic dystrophy. > And, that's a whole other animal. > -- > Date: Tue, 27 Dec 2011 07:51:59 -0800 > From: jcs...@yahoo.com > > Subject: Re: [TMIC] re pins and needles > To: malugss...@gmail.com; bpe...@austin.rr.com; tmic-list@eskimo.com > > I am truly thankful that we have a variety of things to work with. > > just read where possibly next year we will have hydrocodone without > acetaminophen in it. it will have more hydrocodone but without the liver > damage. > > -- > *From:* Dalton Garis > *To:* john snodgrass ; Bernie ; > TMIC > *Sent:* Tuesday, December 27, 2011 9:23 AM > *Subject:* Re: [TMIC] re pins and needles > >John; > > Your point is well taken. I also had difficulty going on Lyrica, but I > hung in there and continued with it because the pain under my skin all over > my body gave me no choice. Before Lyrica, I could not sleep or work; I > felt as though I were being fried with high amperages of electricity. I > could only just lay there in awful pain. And since I had broken my back in > an industrial accident which bent me backwards until I couldn't see below > my chest, I have adjusted what I consider to be painful. > > The Lyrica killed the pain. As for getting off it, why would I do that? > Its addiction is a mute point for me, since living pain-free is itself > addictive; so that I would become immediately addicted to whatever removes > this awful pain. > > Dalton > (718) 838-0437 begin_of_the_skype_highlighting(718) 838-0437 > end_of_the_skype_highlighting > > From: john snodgrass > Reply-To: john snodgrass > Date: Tue, 27 Dec 2011 04:52:09 -0800 (PST) > To: Bernie , Dalton Garis , > TMIC > Subject: Re: [TMIC] re pins and needles > > I personally had no good experience with it. > > I had no bad experience with it. > > Just another one of those trials for me that didnt help out > > Somewhere I read where someone else loved it. > > -- > *From:* Bernie > *To:* Dalton Garis ; TMIC > *Sent:* Tuesday, December 27, 2011 6:25 AM > *Subject:* Re: [TMIC] re pins and needles > > *Not trying to scare off anyone considering taking this medication, but > one has to be very careful with Lyrica, it has some very nasty side > effects. Make sure your doctor starts you on a low dose and that you and > your doctor monitor yourself very closely for these. Make a list of all of > them and keep it handy. I was put on Lyrica and it made my life horrendous > with a lot of misery until they could get me off of it. One also has to be > weened off Lyrica, abrupt stopping of the taking of this medication can > actually kill you. Here are a couple of links that tells you about Lyrica > for you and your doctor to consider:: > > http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ > > http://en.wikipedia.org/wiki/Pregabalin* > > > > >
[TMIC] CBS
Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
[TMIC] Shingles Vaccine
Thank you all for the very quick response to my question about the Shingles vaccine. I wanted to reply individually to you all but somehow the computer won't allow me to access the 15 people who tagged on to Dalton's email. The results indicate some interesting things. 1) Neuro's and Doctors ask us again and again if we had a flu shot prior to the onset of TM. When you directly addressed the question to them--"Did they think the TM was caused by the flu shot they were evasive. But YOU think that the questioning indicates that they thought it did. 2) More of you got the flu shot than didn't. I did too. Our reasons were the same. We were afraid of a devastating bout of flu since our systems are compromised. 3) The majority of you said NO to the shingles shot, even those who had had the disease (It is really bad with terrible burning blisters that take a month or more to go away) said they would rather risk having the disease than possibly have the shot upset their immune system. So thank you to all, I WILL NOT GET THE SHINGLES SHOT! Jim
[TMIC] Does anyone know?
the neuro's who diagnosed my TM thought it may have been caused by a bout of Shingles I had. Two years have passed and my wife is worrying I might get another bout of shingles that would result in more TM damage. Should I get a Shingles vaccine shot or is that risking another attack of TM? The shot is $235.00 and we have been saing for it but now I am wondering what the risk is. Please contribute your knowledge. Jim
Re: [TMIC] Definition
Roger--I used to feel that way most every day--I am a burden on my family--too old to do anything but drink beer and watch TV. I might as well die. They have worked very hard to improve my view on life--I am a para--they wanted to get me into the State vocational rehab program and my attitude was what, learn a new profession at 64? Old dogs and new tricks, right? Well I am currently learning to be a computer architect and am being trained on the auto cad system to draw house plans. I love it! I seem to be a natural at it and am able to turn out a full set of drawings (8 pages) in about a week. I still have much to learn but it just goes to show that even when you think you are a drag on society you may yet find a way to be a useful contributor. On Tue, Aug 16, 2011 at 10:14 AM, Roger & Terese Pratt < r.c.pr...@frontier.com> wrote: > This is how I feel some times as an invalid (or is that invalid as in not > valid). I know it is wrong, but if Nietzshe said it, it must have been > thought many times before. Just having a bad day, I'll be more up tomorrow. > > "The invalid is a parasite on society. In a certain state it is indecent to > go on living. To vegetate on in cowardly dependence on physicians and > medicaments after the meaning of life, the right to life, has been lost > ought to entail the profound contempt of society." > -Friedrich Nietzsche > > - Roger in Kennewick, WA > >
Re: [TMIC] Neurology Now
river pharnacy On Wed, Jun 29, 2011 at 5:29 AM, Dalton Garis wrote: > Friends; > > Can whomever posted the name of that online drug store for cheap > prescriptions please repost? It was something like "Black River," or "Swift > River," or something. > > Thanks, > > Dalton Garis > > From: kevin weilacher > Date: Mon, 20 Jun 2011 13:25:04 -0700 (PDT) > To: Akua , > Subject: Re: [TMIC] Neurology Now > Resent-From: > Resent-Date: Mon, 20 Jun 2011 13:26:07 -0700 > > Yep...I've subscribed for a couple of years nowseems that there is > usually one or two articles of interest in each issue... > I also found the article about Jerry Mathers (Leave It To Beaver) > interesting too > > Kevin > NE Ohio (Canton) > > -- > *From:* Akua > *To:* tmic-list@eskimo.com > *Sent:* Mon, June 20, 2011 3:23:33 PM > *Subject:* [TMIC] Neurology Now > > Had a couple of articles that may be of interest to those with unusual > symptoms: TSC tuberous Sclerosis and Cervical Dystonia. BTW sub is free. > > -- > >
[TMIC] Lyrica
Dalton--thank you so much for steering me to Lyrica. after three weeks of 450 mg a day, I guess I reached my saturation point and rather than taking it on a schedule, I take it when my legs start to jump again and it quiets them in about 30 minutes. I sharpen knives as a small business and I had stopped because of the leg jumping. Just can't have it when you have a blade on the wheel. Now for the first time in two years I am sharpening knives again. Hope I can get all the old customes back! Anyway, thanks alot. Jim
Re: [TMIC] Hey
Yes. these things happen although maybe not to Weiner On Thu, Jun 2, 2011 at 4:04 AM, Janice Nichols wrote: > You are forgiven.I didn’t think that sounded right coming from > you.“Stuff” happens. > Janice > > *From:* Laura Beaudin > *Sent:* Wednesday, June 01, 2011 11:09 PM > *To:* Janice Nichols > *Cc:* James Berg ; tmic-l...@eskimo.net > *Subject:* Re: [TMIC] Hey > > Hi everyone, my sincere apologies… My e-mail account was hacked and this > e-mail was sent to everyone in my address book. I have nothing to do with > this – it was sent out from an IP address in Australia. I wasn't able to > respond sooner because apparently I had "exceeded my e-mail sending limit". > I hope all is well with everyone. > Laura > Lifeportunities <http://www.lifeportunities.com/> > Practical Homeschooling <http://practical-homeschooling.org> > > Schooling confuses teaching with learning, grade advancement with > education, a diploma with competence, and fluency with the ability to say > something new. > ~ Wendy Priesnitz > > How to begin to educate a child. First rule: leave him alone. Second rule: > leave > him alone. Third rule: leave him alone. That is the whole beginning. > ~D.H. Lawrence > > > > > > On Wed, Jun 1, 2011 at 6:29 PM, Janice Nichols wrote: > >> Hey! >> >> Laura Beaudin is a TM member of this website.She is from Canada. >> Don’t know anything about the money making thing. >> Janice >> >> >> *From:* James Berg >> *Sent:* Wednesday, June 01, 2011 3:48 PM >> *To:* laura.beau...@gmail.com >> *Cc:* tmic-l...@eskimo.net >> *Subject:* Re: [TMIC] Hey >> >> This is a bogus item--said there was a Kelly Richards in my town making >> all this money--she doesn't exist--I'll bet it will say your home town if >> you open it. >> >> Eskimo .net--please dump this item >> >> On Tue, May 31, 2011 at 8:59 AM, wrote: >> >>> Hi I just wanted to share this opportunity with you, I've been making >>> 200-300 dollars a day and I started only a week ago. Check out this news >>> article and it will show you how to get started, it's definitely easy enough >>> for you :)! http://www.news7cnbc.com/money >>> >>> >> > >
Re: [TMIC] Hey
This is a bogus item--said there was a Kelly Richards in my town making all this money--she doesn't exist--I'll bet it will say your home town if you open it. Eskimo .net--please dump this item On Tue, May 31, 2011 at 8:59 AM, wrote: > Hi I just wanted to share this opportunity with you, I've been making > 200-300 dollars a day and I started only a week ago. Check out this news > article and it will show you how to get started, it's definitely easy enough > for you :)! http://www.news7cnbc.com/money > >
[TMIC] Lyrica
I finally gave up my no drugs stand and started taking Lyica to see if it would calm my legs. I slowly reached a point where at 150 mg, three times a day (450mg total) I can see some improvement. The spasms are smaller and the pins and needles or vibrating is less. My question is how high a dosage can I go? I can't afford to see a DR to get a prescription as it costs $250.00 to walk in the door so I use a black market/no prescription necessary route to get my medications. I've looked on line for dosages and it looks like I am at the max now. Can anyone give me some advise?
[TMIC] OT
Gunny--you know I support you. Semper fi
[TMIC] Mystery Diagnosis
Did anyone see the "Mystery Diagnosis" program on TM? Just aired today where I live.
Re: [TMIC] revisiting an old issue
I checked out the web sites today and unless you have Lou Gherigs disease you have the two year wait from approval which takes 6 months if you are lucky. On Wed, Apr 27, 2011 at 11:04 AM, Akua wrote: > I too had to wait two years. I applied immediately, too. The wait for > disability is 6 months, the wait for medicare is two years from onset > (or approval). My"approval" was on the first application. I was still > without money for six months and health care for two years while > I was paralyzed and in a manual wheel chair. (I had started a new job two > months before TM crippled me and there was no health insurance...) > > > -- > >
Re: [TMIC] revisiting an old issue
thanks for the input On Tue, Apr 26, 2011 at 9:08 AM, john snodgrass wrote: > ativan along with hydrocodone use to ease the banding but that does not > have much effect anymore for me > > --- On *Tue, 4/26/11, James Berg * wrote: > > > From: James Berg > Subject: Re: [TMIC] revisiting an old issue > To: "john snodgrass" > Cc: "transverse myelitis" > Date: Tuesday, April 26, 2011, 2:28 PM > > > I am having a bad day--the thrumming is at its worst and the banding has > gotten wider and tighter--to the point I couldn't eat dinner or breakfast > this morning. Baclofen does nothing. It took four glasses of red wine and > two alergy pills to get me to sleep. Being in the chair now is making the > banding pain worse. > > any suggestions? > > On Tue, Apr 26, 2011 at 1:11 AM, john snodgrass > http://mc/compose?to=jcs...@yahoo.com> > > wrote: > > I remember hearing the concern of thrumming in the legs. > > You know,,like the sound that a power transformer makes except it's a > feeling,a buzzing or even sometimes like energy going up and down your leg > or legs. > > I gert this a lot and when it is real bad it is from the top of my head to > the bottom of my feet. > > sometimes it even feels like something poking at the bottom of my feet from > the inside trying to get out. > > perhaps i could harness it and drive a car with it! > > I am taking the maximum dosage of baclofen and neurontin and was wondering > if anyone ever ran across something to either slow this part down or even > stop it. > > sometimes it will last all day and can go from irritating to depressing. > > most of the time when this does stop that's when the burning begins. > > this on top of the wast banding and pain can drive me to thinking thoughts > that are not normal for me. > > thoughts like,,perhaps i should find some marijuana and smoke it or > perhaps i should drink enough to pass out or maybe i should punch someone > and they will knock me out! > > my Doc's know about it but have no answer. > > losing insurance on may 5th. > > > >
Re: [TMIC] revisiting an old issue
I am having a bad day--the thrumming is at its worst and the banding has gotten wider and tighter--to the point I couldn't eat dinner or breakfast this morning. Baclofen does nothing. It took four glasses of red wine and two alergy pills to get me to sleep. Being in the chair now is making the banding pain worse. any suggestions? On Tue, Apr 26, 2011 at 1:11 AM, john snodgrass wrote: > I remember hearing the concern of thrumming in the legs. > > You know,,like the sound that a power transformer makes except it's a > feeling,a buzzing or even sometimes like energy going up and down your leg > or legs. > > I gert this a lot and when it is real bad it is from the top of my head to > the bottom of my feet. > > sometimes it even feels like something poking at the bottom of my feet from > the inside trying to get out. > > perhaps i could harness it and drive a car with it! > > I am taking the maximum dosage of baclofen and neurontin and was wondering > if anyone ever ran across something to either slow this part down or even > stop it. > > sometimes it will last all day and can go from irritating to depressing. > > most of the time when this does stop that's when the burning begins. > > this on top of the wast banding and pain can drive me to thinking thoughts > that are not normal for me. > > thoughts like,,perhaps i should find some marijuana and smoke it or > perhaps i should drink enough to pass out or maybe i should punch someone > and they will knock me out! > > my Doc's know about it but have no answer. > > losing insurance on may 5th. > > >
Re: [TMIC] Stem Cell Research
How much mobilitiy do you have? The prliminary research done on rats, took them from being unable to walk to total repair. I know that is the goal of the Shepherd research- Myself, I have no legs at all, nada--plenty of spasms, painful vibrating or buzzing and a very stiff belly band. MRI shows no improvement, nor any enlargemnt of the lesion. On Sat, Apr 16, 2011 at 11:58 AM, john snodgrass wrote: > what did i get a miracle or just sheath regrowth? > > My Neuro told me that the mri showed last year that the sheith had grown > back. > > i asked why did i still have these problems? > > he said it is the damaged nerves inside. > > he said if the sheith were still damaged then i would have worse problems > because of no insulation surrounding that area of the cns. > > whatever the deal,i am thankful that the problems are not worse! > > bad enough as it is,,, > > so if this new research can lead to helping others with cns problems,,i > wish them God speed! > > seen a video,,a lot of people need it everyday ! > > --- On *Sat, 4/16/11, Susan Ebling * wrote: > > > From: Susan Ebling > Subject: Re: [TMIC] Stem Cell Research > To: "James Berg" > Cc: "transverse myelitis" > Date: Saturday, April 16, 2011, 3:40 PM > > > encouraging news. thanks for the update > > On Sat, Apr 16, 2011 at 2:36 PM, James Berg > http://mc/compose?to=molokai...@gmail.com> > > wrote: > > Checking with Shepherd Center in Atlanta who started a Research project in > October to regrow the mylin sheath with stem cell injection, I was pleased > to see that there are now 5 organizations doing the same research in order > to verify results--verifying results is very important to get the FDA to > approve a procedure--assuming they all get positive results (am I wishing > for too much?) this would speed up the approval and get it on the market so > much sooner. Of course the cost will probably be beyond most of our > abilities to pay Results to be announced Oct. 2012. > > > > > -- > Susan L. Ebling > >
[TMIC] Stem Cell Research
Checking with Shepherd Center in Atlanta who started a Research project in October to regrow the mylin sheath with stem cell injection, I was pleased to see that there are now 5 organizations doing the same research in order to verify results--verifying results is very important to get the FDA to approve a procedure--assuming they all get positive results (am I wishing for too much?) this would speed up the approval and get it on the market so much sooner. Of course the cost will probably be beyond most of our abilities to pay Results to be announced Oct. 2012.
Re: [TMIC] disabled social security benefits
I received my first SSDI check 6 months after filing--a one month check with no retro active pmts. Yes my SSDI is partially taxed. On Sat, Apr 9, 2011 at 3:20 AM, rn11...@yahoo.com wrote: > Hi John, >I've been on SS disability since early 1996;got tm August 1995. > Did it say in your acceptance letter you would not get retroactive 5 > months?As far as I know,everyone gets a check (or direct > deposit ) with 5 months benefit. I remember I had to send mine to the long > term disability insurance company,because they had paid my full 60% from > onset of my benefits. (Now I get half from each,until June when I turn 65 > and my LTD ends and my pension starts.) > >Every January,I get a SS Benefit Statement.It shows: > my net benefit > medicare pat B deducted from my benefit > adds the 2 and that is my total benefit > >On the other side there is Notice 703-Read this to see if your SS > benefits may be taxable > Line A enter total benefit > Line B enter one half of line A > Line C enter your total income that is taxable ,such as > pensions,wages,etc. > Line D enter any tax exempt interest > Line E add lines B,C,and D and enter Then read below > > Part of your SS benefits may be taxable if for 2010 you were >1) single and line E is above $25,000 >2) married ,file jointly and line E is above $32,000 OR >you file separately and line E is more than zero(more than $25,000 > if you lived apart from your spouse for all of 2010 > >I am divorced and have not filed any tax return since I became > disabled,but I almost reached the $25,000 limit this year. >I hope this helps;contact me with any questions,and I'll try to help. > Cheryl in sunny Easthampton,MA > > > --- On *Fri, 4/8/11, john snodgrass * wrote: > > > From: john snodgrass > Subject: [TMIC] disbaled social security benefits > To: "transverse myelitis" > Date: Friday, April 8, 2011, 5:07 PM > > to anyone receiving disabled social security monies. > > I received a letter today stating that I will receive my first check May > 11th. > > signed up for it on Nov 5th. > > wont get any retro pay. > > is this money taxed? > > >
Re: [TMIC] Help .....Elizabeth Clark
This is bullshit--my wife and I were contacted with a similar scam that our friend was roobed and needed money and after investigation we found our friend well and happy. Don't fall for it. On Mon, Apr 4, 2011 at 6:29 AM, wrote: > > I'm writing this with tears in my eyes,my family and I came over here to > London,United Kingdom for a short vacation. unfortunately,we were mugged at > the park of the hotel where we stayed,all cash and credit card were stolen > off us but luckily for us we still have our passports with us. > > We've been to the Embassy and the Police here but they're not helping > issues at all and our flight leaves in few hours from now but we're having > problems settling the hotel bills and the hotel manager won't let us leave > until we settle the bills. Well I really need your financial > assistance..Please, Let me know if you can help us out? > > Am freaked out at the moment!! > > Elizabeth Clark... >
Re: [TMIC] Chiropractic treatment
I worry about chiropractors too--I would also like to know if you were ever paralysed in both legs and confined to a wheel chair and more specifically how long after onset did you start to get your legs back. I have been in my chair with no improvement for a year now--is there hope? On Fri, Apr 1, 2011 at 11:35 AM, Bob and Sue Mattis < bobsue6...@roadrunner.com> wrote: > Hey group! > > I don't usually ask about opinions dealing with myself, but more often > about concerns of other folks, but this time it's about me. Has anyone in > our group ever used chiropractic treatment after TM? I have had TM for 10 > years and are able to walk either unaided or with a cane or walker depending > on the circumstances. Over the last few years, because of my gait issues, > and the way I "waddle", I have developed hip pain on a daily basis. I have > gotten approval from my neuro to see a chiropractor but there is still that > little nagging voice in my head that tells me not to mess with my spine. > I'd appreciate any thoughts you have on this. Thanks folks! > > Sue >
[TMIC] Kangen water
My son is raving about the health benefits of Kangen water. does anyone know anything about it? I am trying to prevent him from spending $4000 on a bogus idea. I have started my own experiment with it but am getting it from a local health food outlet. In the meantime mayber some one has knowledge they would like to share?
[TMIC] Fwd: 7%
Not on topic but very worth reading -- Forwarded message -- From: James Berg Date: Mon, Mar 7, 2011 at 11:42 AM Subject: Fwd: 7% To: Lani -- Forwarded message -- From: James Berg Date: Mon, Mar 7, 2011 at 11:40 AM Subject: Fwd: 7% To: molokai...@gmail.com -- Forwarded message -- From: Date: Mon, Mar 7, 2011 at 7:11 AM Subject: Fwd: 7% To: bob.st...@itt.com, emc...@sti.net, fazy91...@yahoo.com, honestgal...@att.net, mauiji...@gmail.com, kathy98...@gmail.com, larryshaw...@yahoo.com, matthewp...@yahoo.com, rcurl...@kpbs.org, charles...@sbcglobal.net, 808v...@gmail.com, wolfi...@mindspring.com *Subject:* 7% *good rules to live by* * -- * So much Widsom! Written by a 90 year old This is something we should all read at least once a week! Make sure you read to the end!! Written by Regina Brett, 90 years old, of the Plain Dealer, Cleveland , Ohio . "To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I've ever written. My odometer rolled over to 90 in August, so here is the column once more: 1. Life isn't fair, but it's still good. 2. When in doubt, just take the next small step. 3. Life is too short to waste time hating anyone. 4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch. 5. Pay off your credit cards every month. 6. You don't have to win every argument. Agree to disagree. 7. Cry with someone. It's more healing than crying alone. 8. It's OK to get angry with God. He can take it. 9. Save for retirement starting with your first paycheck. 10. When it comes to chocolate, resistance is futile. 11. Make peace with your past so it won't screw up the present. 12. It's OK to let your children see you cry. 13. Don't compare your life to others. You have no idea what their journey is all about. 14. If a relationship has to be a secret, you shouldn't be in it. 15. Everything can change in the blink of an eye. But don't worry; God never blinks. 16. Take a deep breath. It calms the mind. 17. Get rid of anything that isn't useful, beautiful or joyful. 18. Whatever doesn't kill you really does make you stronger. 19. It's never too late to have a happy childhood. But the second one is up to you and no one else. 20. When it comes to going after what you love in life, don't take no for an answer. 21. Burn the candles, use the nice sheets, wear the fancy lingerie Don't save it for a special occasion. Today is special. 22. Over prepare, then go with the flow. 23. Be eccentric now. Don't wait for old age to wear purple. 24. The most important sex organ is the brain. 25. No one is in charge of your happiness but you. 26. Frame every so-called disaster with these words 'In five years, will this matter?' 27. Always choose life. 28. Forgive everyone everything. 29. What other people think of you is none of your business. 30. Time heals almost everything. Give time time. 31. However good or bad a situation is, it will change. 32. Don't take yourself so seriously. No one else does. 33. Believe in miracles. 34. God loves you because of who God is, not because of anything you did or didn't do. 35. Don't audit life. Show up and make the most of it now. 36. Growing old beats the alternative -- dying young. 37. Your children get only one childhood. 38. All that truly matters in the end is that you loved. 39. Get outside every day. Miracles are waiting everywhere. 40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back. 41. Envy is a waste of time. You already have all you need. 42. The best is yet to come... 43. No matter how you feel, get up, dress up and show up. 44. Yield. 45. Life isn't tied with a bow, but it's still a gift." 46. Don't sweat the small stuff, it's all small stuff. Its estimated 93% won't forward this. If you are one of the 7% who will, Forward this with the title '7%'. I'm in the 7%. Friends are the family that we choose.
Re: [TMIC] Info on low dose naltrexone ( ldn) if interested
I've just spent an hour checking web sites on LDN and it looks like it could be a helpful drug. Hard to get for sure. Has anyone had experience with it? On Mon, Mar 7, 2011 at 11:58 PM, john snodgrass wrote: > well,I cant say I have never heard of it now. > > thanks for sharing > > --- On *Mon, 3/7/11, jack...@att.blackberry.net < > jack...@att.blackberry.net>* wrote: > > > From: jack...@att.blackberry.net > Subject: [TMIC] Info on low dose naltrexone ( ldn) if interested > To: "TMIC" > Date: Monday, March 7, 2011, 9:21 PM > > > Crystalsmstmldn.org > > > Sent via BlackBerry by AT&T > > >
[TMIC] Fwd: [SPAM] CCSVI and TM
-- Forwarded message -- From: Date: Mon, Feb 21, 2011 at 7:08 AM Subject: RE: [SPAM] CCSVI and TM To: James Berg A number of physicians in the United States are currently providing endovascular treatment for patients with CCSVI. Of these, some have made their work public, while others prefer to remain private, accepting new patients primarily through word-of-mouth. Still more doctors are actively working to begin providing treatment, either by setting up private practices or waiting for approval from the Institutional Review Board of their organization. Nonetheless, for many wanting treatment, the options remain few and may require out-of-pocket medical expenses and travel. However, at this time, CCSVI Alliance is hesitant to publish a list of all known doctors providing treatment. First, some physicians simply do not want their names publicly listed. Second, we are uncertain whether any such list would legally or even tacitly imply that CCSVI Alliance vouches for and endorses these doctors when in fact we may or may not be familiar with their practice. Still, we understand the imperative to make treatment providers available to those seeking treatment, and we are actively exploring options for collaborating with treatment centers and treating physicians to post useful information for potential patients. Until we have our process in place, we suggest the following options: · See our *Discussing CCSVI with Doctors* document for tips on how to discuss CCSVI with various types of physicians. · Search for potential CCSVI treatment providers on the CCSVI section of ThisIsMS: http://www.thisisms.com/forum-40.html (Note again, however, that CCSVI Alliance does not endorse or vouch for physicians you may find) · Reach out to Interventional Radiologists via http://www.sirweb.org · Discuss treatment options with your physician team Regards, CCSVI Alliance Original Message Subject: [SPAM] CCSVI and TM From: James Berg Date: Sun, February 20, 2011 6:48 pm To: i...@ccsvi.org The results seen in CCSVI patient home videos is really exciting. Transverse Myelitis patients have been helped but the medical industry and the insurance people are blocking us from having the procedure. I have a friend who was all set to have the procedure done in albany but the insurance people stopped it at the last minute. My main reason for writing this is to findout if CCSVI is being done is Hawaii and by what Dr. I am convinced it will help me but I want to bypass the road blocks and just get it done. can you help me with this? Jim Berg Kapaa, Kauai Hawaii 96746 ALOHA 808-658-0356
[TMIC] ccsvi
I have just watched the home videos of 20 or more MS patients that went thru this angioplasti treatment to increase blood flow to the spine. Absolutely amazing results--check for yourself. Neurologists and insurance companies are fighting it but the results are real. I've always compared the tingling vibration in my legs to having them fall asleep. I know that is caused by the blood flow being cut off so why couldn't it be the same for my legs? Increase the blood flow and they wake up?? Seriously, just type in ccsvi or ccsvialliance--the patients who have been helped are banding together to get the word out. MS isn't nuch different from what we TMers have, is it. Jim
[TMIC] New Videos of the conference
They have come a long way to developing a cure for our problems.--my biggest worry is the cost
[TMIC] Spam Attack
I had 16 non TM emails today--anyone else?
Re: [TMIC] 10th!
You guys are amazing--next month will be my first complete year with TM--without the great support I have from friends and family I would have pulled the trigger already. I can't see myself getting used to being wheel chair bound. On Thu, Feb 3, 2011 at 3:58 PM, Neil McNeil wrote: > It’s been a long time since I have posted to the list but today is > special so I decided to drop by and say hello. Feb 4th is my 10thanniversary > of TM. It’s hard to believe that ten years have passed and I > like to say that time flies when you can feel your toes! > > > > As crazy as it sounds there are worse things than getting TM. Over the past > ten years I have gained an appreciation for many things as a result of TM. > I’m so glad to live in a country where my medical care was provided free of > charge and I didn’t have to fight with HMO’s or sell my house to deal with > medical bills. I’m glad I have been able to work and I’m so pleased to have > met some wonderful people who got dealt the same hand and made the most of > it. > > > > My theory remains that we don’t come with a warranty and there is no sense > in bitching and whining about what happens. When I first got TM I asked my > neurologist “why me?” He replied “it has to be someone”. I thought that > answer was brilliant. Someone wins the lottery and someone gets hit by > lightning. Ten years ago I made a decision that I was going to make the most > of things and I’m glad I did. > > > > So…hello again to those of you who have been here for a long time and > also to those who are new. Hang in there and keep trying to wiggle those > toes….it pays off! > > > > Neil > > > > (In NS) >
Re: [TMIC] Returns
The Pedal Machine is called SUNNY, bought it through Amazon and got free freight. I can wiggle my toes now and even pull my leg, left only, back about 6 inches and then extend it again. good luck On Wed, Jan 26, 2011 at 3:49 PM, Akua wrote: > WOW! wow wow! > So so similar. > > Thank you ever so very much for sharing these insights!!! > > It is so affirming to hear my symptoms described--- yes humming and > thrumming! > > GReat solutions! > > What is the name of your pedal machine? > > My PT came today and brought a walker. She wanted me to try to stand. I am > near tears of joy to recount this --- there's no way I could do this, but it > just meant SO MUCH to be seen as a person who could be assisted and > improved vs. being denied,* derided* or dismissed. > > I pulled it close and talked about how the farme need to fit around me, vs > be in fonr of me. > You can't stand on jello, she mused. > > So we talked about isometrics--- she asked me to push my extended leg ( > that she held) > down against her hand. I tried and saw nothing... but she said she felt > flutterings. > > So i did these several times on each leg --she felt flutterings. > > BUT I FELT THE PULSE MOVE FROM MY THIGH TO THE BACK OF MY CALF. > > I offer up prayers and praise. > > She is going to give me another series of exercises that i can do in bed to > reawaken these connections. > She talked about a stimulation machine that makes the muscles contract. > > Again these are things that were never done for me in the five years of TM > paralysis. > > Thanks again, for chiming in! > That we heal and that all be well, > Akua > > > So familiar--my wife does my pt because I cannot afford $1600/day for a > live in PT facility that was prescribed for me. I know all about the > buzzing--I call it humming in my feet and the stronger thrumming in my > legs. But my wife found a solution for feet jumping off the wheel chair. I > use a regular chair in the house and she uses a velcro back brace (the kind > with no shoulder straps) and wraps it around the legs of the wheel chair and > my legs. Works! > > > > I also have a "Jazzy" electric wheel chair that we bought second hand from > Craigs List for a $1000 that I use for outdoor activities like my grandsons > ball games and trips to Cost Co. Here's the neat part. She screwed a pair > of sandals onto foot rest of the Jazzy and straps my feet in so they can't > jump out. > > > > We also bought a pedal machine and she put sandals on that as well because > my feet wouldn't stay on it. $100 for the pedal machine 25 for the > slippers. It moves my legs for me and I am now doing 30 minutes at top > speed twice a day. It will keep your legs from shrinking. > > > > I also contacted Redman about a standup electric wheel chair and found it > cost $28,000. I passed. > > > > Jim > > -- > > > > -- > > >
Re: [TMIC] Returns
So familiar--my wife does my pt because I cannot afford $1600/day for a live in PT facility that was prescribed for me. I know all about the buzzing--I call it humming in my feet and the stronger thrumming in my legs. But my wife found a solution for feet jumping off the wheel chair. I use a regular chair in the house and she uses a velcro back brace (the kind with no shoulder straps) and wraps it around the legs of the wheel chair and my legs. Works! I also have a "Jazzy" electric wheel chair that we bought second hand from Craigs List for a $1000 that I use for outdoor activities like my grandsons ball games and trips to Cost Co. Here's the neat part. She screwed a pair of sandals onto foot rest of the Jazzy and straps my feet in so they can't jump out. We also bought a pedal machine and she put sandals on that as well because my feet wouldn't stay on it. $100 for the pedal machine 25 for the slippers. It moves my legs for me and I am now doing 30 minutes at top speed twice a day. It will keep your legs from shrinking. I also contacted Redman about a standup electric wheel chair and found it cost $28,000. I passed. Jim On Sat, Jan 22, 2011 at 9:55 AM, Akua wrote: > I am getting a lot of little "returns" from my (recently begun) in-home > pt. > She manipulates my legs, not for long, > but since her ministrations I've begun to feel what she does as she does it > and > affirmingly() > but uncomfortably(!!!) > I have a loud buzzing in my feet > thrumming in my legs > and > my legs fly off the wheelchair > several to many times a day. > We are now trying to figure out > how to keep my legs on the wheelchair. > > Also I can now feel a most of the time my leg comes off the wheelchair. > She gave me a series of upper body with weights to perform. > I feel the signal go down my leg when i do these. > > Which affirms my belief that if i had money, I'd be walking. > I was and am unable to buy thorough therapy for myelf. > I ran into a great physiatrist last year who prescribed this for me, > knowing > there's no paratransit here for me to get to go anywhere with > any regularity. > > This is the first pt that has worked on my legs--- no one > has touched my legs, other than myself for five years. > > She keeps thinking of ways for me to stand. I told her about > the unaffordable standers Easy Stand, and the Gait harness > which let paraplegics stand and walk and there is the REdman > Power Chair, so if anyone is in touch with > those millionaire shows, tell them i would like one of these > devices to improve my health and help me stand and > "walk" and perhaps walk, again. > > > Akua > > -- > >
Re: [TMIC] CCSVI / Liberation Treatment
Thank you for your kind words. It really is good of Cyril to be a guinea pig for us all. sure hope it works. On Wed, Jan 12, 2011 at 8:28 AM, Janice Nichols wrote: > This could be a wonderful happening for us TM’ers. If not, Cyril has > certainly done his best. I wish him the very best of luck. > Janice > > *From:* James Berg > *Sent:* Tuesday, January 11, 2011 6:32 PM > *To:* Cyril Mansperger > *Cc:* transverse myelitis > *Subject:* Re: [TMIC] CCSVI / Liberation Treatment > > I am very excited and hopeful and will stay in touch with you through > out your recovery period of several months. Email is my choice of > communication method and since I live over 6,000 miles from you (assuming > Albany means NY) in Hawaii. I am the only TM patient in the state and the > only one there has ever been. Neurologists here only knew of TM from > books. I am 63, one year with TM and do not want to spend the rest of my > life in a wheel chair. > > I just came across an article on CCSVI this morning and began researching > it. A light went off in my brain and I went back to my in-box looking for > your email. It really didn't mean anything to me when I first read it and > since I knew nothing about your question, I did not respond. I hope others > will now respond as well since what you are willing to do may help us all. > Even if the angioplasty does not work, please let me thank you for all of us > TM'ers for trying out a truly new approach to solving our problem. I will > be in touch within a couple of days of your surgery. Do you know how long > you might be in the hospital? I don't want to bother you there. > > Best of Luck from all of us at TMIC > > Jim > > On Tue, Jan 11, 2011 at 1:50 PM, Cyril Mansperger < > cyril.mansper...@gmail.com> wrote: > >> James, thank you so much for responding; I was getting the feeling that I >> did not exist. To date there have been a bit over a thousand angioplasties >> done in this country and I consulted with a group of interventional >> radiologists associated with Albany Medical Center. This particular group >> led by Gary Siskin md has performed about 485 of the total to date, on MS >> patients, as part of a study. I was introduced to them through a friend of >> mine with 35 years of MS. He has had considerable improvement in spite of >> the length of time he has been a victim and in only 2 months. >> I met with Dr.Siskin [he is on a u-tube speaking to colleagues] who >> was concerned about my expectations as he was unaware of the two cases of >> TM, I had heard of outside this country. I basicly said I have tried many >> different therapies since TM 3/1997 diagnosis and some resulted in more >> dramatic developments than others, but I was game for anything, whether no >> gains or even a little. It was worth the try, be it with him or the Greeks >> who performed it on the patient, I believe, from England. >>He said ok; however, I would be the first TMer in this country and if >> there is improvement he would wish to write it up in the appropriate >> journals and include it in his lectures, of course. No hesitation on my >> part. He also decided to do it only on the Azygous vein since I had no brain >> lesions. >>I am sceduled for February 4th @ Albany Med. I'm not real comfortable >> with Internet [I'm a slow typer]. Feel free to call:845-797-9932 can >> leave a message, if no answer. >> >> >> >> On Tue, Jan 11, 2011 at 3:25 PM, James Berg wrote: >> >>> How are you doing? I have been reading up on this and we allneed to know >>> how it may or may not have helped you. >>> >>> >>> On Sun, Jan 2, 2011 at 6:36 PM, Cyril Mansperger < >>> cyril.mansper...@gmail.com> wrote: >>> >>>> Please, would anyone who has recieved the venogram with angioplasty >>>> performed on them contact me. I am going for a consultation Tuesday with a >>>> group of Interventional Radiologists to educate them as to the >>>> possibilities >>>> and I only know of two Patients to date that have had the procedure >>>> performed on them and with great success. >>>> Thank You. >>>> >>>> Cyril Mansperger 845 797-9932 >>>> >>> >>> >> >> > >
Re: [TMIC] CCSVI / Liberation Treatment
I am very excited and hopeful and will stay in touch with you through out your recovery period of several months. Email is my choice of communication method and since I live over 6,000 miles from you (assuming Albany means NY) in Hawaii. I am the only TM patient in the state and the only one there has ever been. Neurologists here only knew of TM from books. I am 63, one year with TM and do not want to spend the rest of my life in a wheel chair. I just came across an article on CCSVI this morning and began researching it. A light went off in my brain and I went back to my in-box looking for your email. It really didn't mean anything to me when I first read it and since I knew nothing about your question, I did not respond. I hope others will now respond as well since what you are willing to do may help us all. Even if the angioplasty does not work, please let me thank you for all of us TM'ers for trying out a truly new approach to solving our problem. I will be in touch within a couple of days of your surgery. Do you know how long you might be in the hospital? I don't want to bother you there. Best of Luck from all of us at TMIC Jim On Tue, Jan 11, 2011 at 1:50 PM, Cyril Mansperger < cyril.mansper...@gmail.com> wrote: > James, thank you so much for responding; I was getting the feeling that I > did not exist. To date there have been a bit over a thousand angioplasties > done in this country and I consulted with a group of interventional > radiologists associated with Albany Medical Center. This particular group > led by Gary Siskin md has performed about 485 of the total to date, on MS > patients, as part of a study. I was introduced to them through a friend of > mine with 35 years of MS. He has had considerable improvement in spite of > the length of time he has been a victim and in only 2 months. > I met with Dr.Siskin [he is on a u-tube speaking to colleagues] who was > concerned about my expectations as he was unaware of the two cases of TM, I > had heard of outside this country. I basicly said I have tried many > different therapies since TM 3/1997 diagnosis and some resulted in more > dramatic developments than others, but I was game for anything, whether no > gains or even a little. It was worth the try, be it with him or the Greeks > who performed it on the patient, I believe, from England. >He said ok; however, I would be the first TMer in this country and if > there is improvement he would wish to write it up in the appropriate > journals and include it in his lectures, of course. No hesitation on my > part. He also decided to do it only on the Azygous vein since I had no brain > lesions. >I am sceduled for February 4th @ Albany Med. I'm not real comfortable > with Internet [I'm a slow typer]. Feel free to call: 845-797-9932 can > leave a message, if no answer. > > > > On Tue, Jan 11, 2011 at 3:25 PM, James Berg wrote: > >> How are you doing? I have been reading up on this and we allneed to know >> how it may or may not have helped you. >> >> >> On Sun, Jan 2, 2011 at 6:36 PM, Cyril Mansperger < >> cyril.mansper...@gmail.com> wrote: >> >>> Please, would anyone who has recieved the venogram with angioplasty >>> performed on them contact me. I am going for a consultation Tuesday with a >>> group of Interventional Radiologists to educate them as to the possibilities >>> and I only know of two Patients to date that have had the procedure >>> performed on them and with great success. >>> Thank You. >>> >>> Cyril Mansperger 845 797-9932 >>> >> >> >
Re: [TMIC] meds from Canada
I second your opinions-quality is the same, costis much less. On Fri, Jan 7, 2011 at 7:02 AM, Patricia Cooley wrote: > Cheryl my husband always got his meds from Canada before we had > prescription coverage with Medicare. We were always satisfied with the > quality and speed of delivery. The price was about ½ of the cost here in > the USA. I have recommended Canada drugs to anyone who hits the donut hole > or is close to it. > > > > Patti > > > > *From:* rn11...@yahoo.com [mailto:rn11...@yahoo.com] > *Sent:* Friday, January 07, 2011 10:48 AM > *To:* tmic-list@eskimo.com > *Subject:* [TMIC] meds from Canada > > > > I just got my first med from Canada. It's a generic form of Diovan called > valsartan,for high blood pressure. It also helps protect the kidneys > (important because I'm also diabetic). It costs $70+14 for shipping for a 3 > month supply. The first order has a $10 off coupon. > The best part is by not using my insurance,I will save and not hit the > 'donut hole' this year.The co-pay is the same that my insurance charges for > a tier 1 drug. The drug is made in India. I just read the info on 2 other > meds I get and 1 is made in India,and 1 in Israel. > All the other meds I take are generic,except insulin. > Cheryl > > >
Re: [TMIC] REHAB
Are all rehabs the same? I was charged $1600/day and treated like cattle. On Mon, Jan 3, 2011 at 2:49 PM, Akua wrote: > The closest I came to hell on earth was in rehab. I was allowed to fall > twice. I was given the wrong meds daily for nearly two months, I was > insulted and demeaned. I remember the nurse entering my room and finding me > crying -- I was in awful electric pain --- and she told me I shouldn't be > crying. She often brought he son to work. I wrote her about her gross > insensitivity and she apologized. > > I worked hard to learn how to use the sliding board to get in and out of > bed-- it was so so hard, and frightening, because an idiot had let me fall, > but this mainly > because if you couldn't get up, you wouldn't be attended to. Now that I'm > home, > I understand one of the basic challenges the idiot didn't address-- the > wheelchair slides on a polished, linoleum floor. I have a bathmat with grips > by my bed now, so my wheelchair, doesn't slide. this is just one of a > zillion things they could have taught or worked on or shared or presented > to or for me and didn't. And this was rehab, to ready me for life on my > own as a paraplegic: worthless. > > One of the friends I made there was immobile without assistance, although > unlike me, she was not paralyzed. She was left on her bedpan > for an hour. I had passed aides chatting at the station, ignoring her > buzzer, as i wheeled down the hall to see her. > > I wrote the board and management and met with management. I met with the > dietitian twice, who quit about a month after i left. She told me that she > was unable to get me the food that with restore my health ( fresh fruit and > vegtables, fish, whole grain breads, baked potatoes). > > I kept in touch with several friends I made there who were still there when > I left, because we all knew the importance of having people call. > > Only the cleaning staff helped. They advocated and interceded. I'll never > forget one man who came and prayed for and over me. > > An investigation began when I and several other patients lost over 50 > pounds. The few visits I had, folks brought food. Staff ate or discarded my > (good) food. > > So, while I don't know about the hip pain, I can relate to the soul painof > being in a nursing home. > > It was like being in prison. There was a courtyard allegedly for getting > air--- the door was always locked. I was awakened, whenever they felt like > it, seldom consistently. Hellish to be awakened at 5 a.m. to have blood > drawn by unskilled phlebotomists. Privacy was seldom observed > I remember always asking for doors or curtains to be closed. > > If Cindy needs calls, I'm more than willing. all other things being equal, > being in a nursing home is awful. > > Akua > > -- > > > http://www.healrecover.blogspot.com > http://www.akualezli.blogspot.com > "When I despair, I remember that all through history the way of truth and > love has always won. There have been tyrants and murderers and for a time > they seem invincible but in the end, they always fall - think of it, > always." > Mohandas Gandhi >
[TMIC] Ultra Sound
Does anyone know if Ultra Sound treatment on the affected spinal area helps or hinders recovery? I am trying it now. Any advise would be helpful. grasping at straws.
Re: [TMIC] CINDY MCLEROY
NOT FOR THE SQUEEMISH! For those of you who do not know what Cindy is going through, I had a double break of the femur in 1987 and was given a choice of a nail (rod) or a cast. With the rod they can make your leg the exact correct length. With a cast, probably not which means a limp for life. They drilled a hole through the bone in the lower leg to install a 1/4" by 5" metal shaft to hook up the traction ropes to stretch out the leg to the proper length as the tendons and ligaments pulled tight after the break. After a week, surgery. They dislocated my hip to insert the rod or nail into the center of the femur where the bone marrow is. The nail is 18" long and 5/8" diameter, hollow with a slit down the entire length,( mine is stainless steel) and has to be preshaped to the curve of the leg. It's called a nail because they pound it in. Mine didn't fit and they had to make another one so the surgery lasted 12 hours. With my leg broken in 3 pieces, they put 6 --2 1/2" screws to hold the pieces in place. Over a few months the screws are removed. After a year or so they want to remove the nail. I decided to keep mine in rather than go through the trauma of the removal. It was over a year after surgery before I was able to walk without crutches and it was a year later when I got my first infection. Apparently the Nail can move once the screws are out and after a hiking trip the rubbing caused an infection. It was very painful but after two weeks of anti-biotics I got over it. I had two more infections after that but none for about 6 years. I am happy that I went with the nail rather than a cast as I could walk and run just fine until the TM onset. Cindy, I hope they keep you stoned as much as you want because I know the pain you have been through and understand what is in front of you yet. I just want our people to understand that it is easy to say "they put in a rod and they took it out" but it is so much more than that. I feel your pain. God Bless You Jim On Sun, Jan 2, 2011 at 7:59 PM, JOAN FINK wrote: >THINGS ARE LOOKING PRETTY GOOD SO FAR. THE ROD IN HER FEMUR HAD TO BE > REMOVED AND THE DR. FELT THEY WERE AHEAD OF THE INFECTION. SHE HAS BEEN > TRANSFERRED TO A REHAB FACILITY NEAR ST. JUDE. IT'S GOING TO TAKE > TIME... WILL LET THE LIST KNOW MORE AS IT HAPPENS. > > SHE DOES NOT HAVE ACCESS TO HER COMPUTER/E-MAIL. I HAVE READ HER ALL > MESSAGES SENT TO ME FULL OF YOUR WELL-WISHES AND PRAYERS. FEEL FREE TO > CONTACT ME AT ANY TIME. > > A FELLOW TM'ER SINCE 2000 > JOAN FINK > >
Re: [TMIC] 2010 symposium videos
I found the video on Tm quite interesting. The very short discussion about stem cell theapy was disappointing though. On Mon, Dec 27, 2010 at 10:28 AM, Jim Lubin wrote: > The first 14 videos from the 2010 Rare Neuroimmunologic Disorders Symposium > are now online. These are all the presentations from day 1 of the Dallas > symposium. > > http://www.myelitis.org/rnds2010 > > The videos will stream online with Flash or HTML5 browsers (iPad/iPhone). > The videos can also be downloaded for viewing offline in mpeg4 format. > > Contact me if you have any problems. > > Jim Lubin > jlu...@myelitis.org > > >
Re: [TMIC] Stem Cell treatment
Thanks for the warning--60 minutes did a show on something similar and provedit was a complete rip off--I believe it was about curing Lou gerhigs disease. time will tell with these things. they need to be independantly repeatable. On Tue, Dec 28, 2010 at 2:07 PM, Cody wrote: > 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] Stem Cell Story Walking
wow--real help may be on the horizon! Thank you Candis On Mon, Dec 27, 2010 at 2:02 AM, CANDIS KALLEY wrote: > > Remarkable story regarding stem cells! > > > http://napervillesun.suntimes.com/2859641-417/orr-grekos-progress-bill-doctor.html > > Life is short! Break the rules! Forgive quickly! Kiss slowly! > Love truly, Laugh uncontrollably . > And never regret anything that made you smile. > > > Prayers and thoughts for you and yours, > > Candy K. >
[TMIC] Fwd: Stem cell patient
Update from Sheperd Center, Atlanta on Stem cell research with human subjects to restore the mylan sheath -- Forwarded message -- From: Date: Mon, Dec 13, 2010 at 1:08 PM Subject: Re: Stem cell patient To: James Berg Hi Mr. Berg, I'm sorry, but I cannot report on this project. Only when the funding company has analyzed the data and released a publication or presented the information to the media or at a conference will anyone know the true results. Take care, Leslie Leslie VanHiel, BME, MSPT, CCRC SCI Research Program Coordinator Shepherd Center 404-350-7681 *James Berg * 12/01/10 11:15 PM To sciresea...@shepherd.org cc Subject Stem cell patient It has been 6 weeks since the first stem cell treatment was done to repair the spine. what report do you have so far? ForwardSourceID:NT2536
[TMIC] Fwd: Merry Christmas to all
-- Forwarded message -- From: James Berg Date: Mon, Dec 13, 2010 at 12:49 PM Subject: Merry Christmas to all To: tmic-list-requ...@eskimo.com I want to wish everyone a Merry Christmas and I pray there is some improvement in your lives during the next year. I am thankful that I have my upperbody not affected by TM and look forward to medical science finding a way to regrow the Mylan sheath. Even though I cannot walk I can use my hands and arms and brain and my laptop to communicate with my friends across the country. Each of you and your strength provides a reason for us to go on and without contact with you all life would be much harder indeed. It seems that all of us have different restrictions from TM and while I get very depressed about not being able to use my legs, I have the good forture not to have the severe pain many of you experience. The level of pain I do have is mostly manageable and so I consider myself very lucky. I think that each of us must look at the positive abilities we have that others may not have to help us gather the strength and will to continue. May God bless you all. Jim
Re: [TMIC] MRI
I stopped Baclofen because of the muddled mind--I guess we're all different On Sat, Dec 11, 2010 at 1:36 PM, wrote: > Hi John > I was wondering, why do they think baclofen is making you stumble? I know > side effect is dizzy/tired. For me I have not experienced dizziness but I am > getting so disgusted with fatigue I have started 2 slowly cut down > recently. Was taking 5 20mg. Day. Now 4 hopefully can drop more. But getting > so tired of all this tm crap My insides want 2 scream out as loud as I > can!!! Hang in there. Hopefully u will get relief soon. > Sent via BlackBerry by AT&T > >
[TMIC] Peddle Machine
Has anyone used a peddle machine to work their legs? I am using one now with the idea of keeping my legs from atrophy. My questions are how long should I run my legs at one session and is it adviseable to do more than one session a day. I am currently doing 20 minutes and one session a day at full speed--about 1350 revolutions in 20 minutes. Any thoughts on this?
Fwd: [TMIC] stem cell treatment for spinal cord lesions
-- Forwarded message -- From: James Berg Date: Mon, Nov 15, 2010 at 12:10 PM Subject: Re: [TMIC] stem cell treatment for spinal cord lesions To: john snodgrass Now that the US is doing stem cell testing/research on those who have had spinal cord injury in the short term, and Switzerland is doing (or will be doing) stem cell research on those who have had spinal cord injury over the longer term, there is *is hope* for the average TM victim to receive help, although it will be several years yet. at least more than one group is working on it ! I dreamt again last night of walking and doing normal activities. Was hard to wake up and find that I can't. On Mon, Nov 15, 2010 at 11:36 AM, john snodgrass wrote: > that would be totally awesome! > > --- On *Mon, 11/15/10, Patricia Cooley * wrote: > > > From: Patricia Cooley > Subject: RE: [TMIC] stem cell treatment for spinal cord lesions > To: em...@telephonelady.com, tmic-list@eskimo.com > Date: Monday, November 15, 2010, 3:28 PM > > Emily we will pray that he is able to be included. > > > > Patti - Wisconsin > > > > *From:* Emily [mailto:em...@telephonelady.com] > *Sent:* Monday, November 15, 2010 1:11 PM > *To:* tmic-list@eskimo.com > *Subject:* RE: [TMIC] stem cell treatment for spinal cord lesions > > > > My husband is currently in the 3-12 month window….he was diagnosed on > September 2nd with TM T-7-11. We have contacted my husband’s neurologist > to see if they could get him in this trial in Switzerland. We are awaiting > a reply. > > > -- > > *From:* Dalton Garis [mailto:malugss...@gmail.com] > *Sent:* Monday, November 15, 2010 1:39 PM > *To:* fr...@franksheldon.com; tmic-list@eskimo.com; Garis, Brooks (Darien, > CT) > *Subject:* Re: [TMIC] stem cell treatment for spinal cord lesions > > > > Could it be the miracle mankind has been waiting for? Just imagine if this > thing works! > > Dalton > -- > > *From: * > *Date: *Mon, 15 Nov 2010 14:10:01 + > *To: * > *Subject: *[TMIC] stem cell treatment for spinal cord lesions > *Resent-From: * > *Resent-Date: *Mon, 15 Nov 2010 06:10:06 -0800 > > News release: > > > StemCells, Inc. Files to Conduct Neural Stem Cell Trial in Chronic Spinal > Cord Injury > PALO ALTO, Calif., Nov 15, 2010 (GlobeNewswire via COMTEX) --StemCells, > Inc. (Nasdaq:STEM) announced today that is has filed an application with > Swissmedic, the Swiss regulatory agency for therapeutic products, to conduct > a clinical trial in Switzerland of the Company's HuCNS-SC(R) purified human > neural stem cells in chronic spinal cord injury patients. If authorized, the > study would enroll patients who are three to 12 months post-injury."With > this filing we have taken a tangible step to broaden the clinical > development of our HuCNS-SC product candidate beyond the brain and into the > spinal cord," said Martin McGlynn, President and CEO of StemCells, Inc. > "This exciting initiative is supported by extensive preclinical research > demonstrating the ability of our proprietary cells to restore lost motor > function when transplanted in the chronic spinal cord injury setting. The > prospect of extending the treatment window to months or longer following > injury would mean that a much larger population of injured patients could > potentially benefit from such an approach." > > >
Re: [TMIC] Shingles Vaccine
I am told that my case of shingles (herpes zoster) is the most likely cause of my TM. I've been advised not to have any vacinations/ On Thu, Nov 11, 2010 at 1:32 PM, CANDIS KALLEY wrote: > Carol, Shingles is one of the viruses listed as possible causes for TM. > I refuse any vaccines only because so many may cause a flair up. That's > just my 2 cents. > > Life is short! Break the rules! Forgive quickly! Kiss slowly! > Love truly, Laugh uncontrollably . > And never regret anything that made you smile. > > > Prayers and thoughts for you and yours, > > Candy K. > > - Original Message - > From: "Carol E" > To: tmic-list@eskimo.com > Sent: Thursday, November 11, 2010 6:29:00 PM > Subject: [TMIC] Shingles Vaccine > > What every ones opinion on getting the vaccine for shingles? I'm 60 > and last week for my annual physical, my doctor recommended that I get the > shingles vaccine. I didn't get, because I wanted to ask the TM group and > the medical people on the list. > > *Carol in Addison, IL* > >
Re: [TMIC] HAPPY November Birthday
YES, YES! Happy Birthday All Novembers!! On Mon, Nov 1, 2010 at 12:08 PM, Akua wrote: > Happy Birthday to the November kids! > > -- > >
Re: FW: [TMIC] burning spine
does anyone know when TM was first diagnosed--how long it has been around? On Sun, Oct 31, 2010 at 12:08 PM, PAMELA S wrote: > > > -- > From: subers...@msn.com > To: jcs...@yahoo.com > Subject: RE: [TMIC] burning spine > Date: Sun, 31 Oct 2010 15:06:57 -0700 > > Hello John; I am new to this site, but I feel the burning. I also feel it > around my rib cage along dermatones. As a result, when I fist had the > transverse myelitis, my doctors thought I was breaking out with shingles. > But, I never got the shingle sores. After it quit burning it itched like > crazy. I've had so many doctors tell me they didn't know what this was > until recently. So I thought maybe it wasn't that common. > > > Date: Sat, 30 Oct 2010 15:50:38 -0700 > > From: jcs...@yahoo.com > > To: tmic-list@eskimo.com > > Subject: [TMIC] burning spine > > > > > anybody ever feel a burning sensation in their spine? > > > > we have talked about the legs and feet and things but this burning in my > spine may be the muscle at the spine but it sure feels like it is in it. > > > > sometime i feel the sensation you felt when they done the spinal tap. > > > > sickening. > > > > > > > > >
[TMIC] Fwd: Stem Cell research to regrow the myelin sheath
-- Forwarded message -- From: James Berg Date: Wed, Oct 20, 2010 at 3:27 PM Subject: Fwd: Stem Cell research to regrow the myelin sheath To: mauiji...@gmail.com -- Forwarded message -- From: James Berg Date: Wed, Oct 20, 2010 at 3:26 PM Subject: Fwd: Stem Cell research to regrow the myelin sheath To: lani_...@hotmail.com -- Forwarded message -- From: Date: Wed, Oct 20, 2010 at 12:12 PM Subject: Re: Stem Cell research to regrow the myelin sheath To: James Berg Hello Mr. Berg, Thank you for your email and your offer to participate in stem cell studies. I am sorry to hear about your experiences since March. It must be very frustrating. As you know, the Geron stem cell project is only working with those with very recent injuries at this point. This first stage is only with a few participants to see if the cells are safe. The next stage will see if the cells are at all effective in a larger group with very recent injuries. Unfortunately, this full process takes years. I do not know Geron's plan for testing people with more chronic injuries/conditions, but I doubt they will test this group before knowing the results of these first two stages of research. At least we are finally taking the first steps though! You are welcome to visit our website, *www.shepherd.org*, and click on the Research tab to review all of our ongoing research projects here and contact information for the coordinator of each project. There is also an online "Intake Form" to send information that would be kept in a secure database. Our coordinators use this database to look for people to contact who might qualify for their studies. Feel free to contact me again if you have any further questions. Best wishes to you, Leslie Leslie VanHiel, BME, MSPT, CCRC SCI Research Program Coordinator Shepherd Center 404-350-7681 *James Berg * 10/12/10 05:24 PM To sciresea...@shepherd.org cc Subject Stem Cell research to regrow the myelin sheath My name is James Berg and I have Transverse Myelitis. It began suddenly in March of this year and the traditional steroid and blood antibody treatments mere no help. I have no use of my legs, bladder or bowels. I would like to be considered for your stem cell testing program. I understand that the current testing is for very recent injuries but I am hoping you may be moving forward with testing on individuals who have had the problem for several months. I can provide hospital records and a complete spinal MRI on Disk. My problem lies at T-10 to T-12. Please contact me if my body can be of service. James Berg ForwardSourceID:NT2276
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 > > > > > -- > >
Re: [TMIC] First human injected in human embryonic stem cell trial
I just found this story on the CBS News site along with the video--great stroy and all hope On Mon, Oct 11, 2010 at 7:54 PM, James Berg wrote: > CBS NEWS TONiTE--Johnson Center has injected the first human with embrionic > stem cells to repair the myelin sheath--with FDA APPROVAL--the initial > testing is for newly injured subjects (7-14 days)and it is expected that > results will show within two months. The Dr is highly optimistic. A second > type of stem cell will be used for patients that have had the condition for > months and even years. I have this recoded on my DVR==contact is John > Center.com > > > On Mon, Oct 11, 2010 at 12:31 PM, Akua wrote: > >> >> >> http://pagingdrgupta.blogs.cnn.com/2010/10/11/first-human-injected-in-human-embryonic-stem-cell-trial/?hpt=T2 >> >> First human injected in human embryonic stem cell trial >> >> "After years of animal trials, the first human has been injected with >> cells from human embryonic stem cells, according to Geron Corporation, the >> company which is sponsoring the controversial study. >> >> "This is the first human embryonic stem cell trial in the world," Geron >> CEO Dr. Thomas Okarma tells CNN. >> >> Geron is releasing very few details about the patient, but will say that >> the first person to receive cells derived from human embryonic stem cells >> was enrolled in the FDA-approved clinical trial at the Shepherd Center, a >> spinal cord and brain injury rehabilitation hospital in Atlanta, Georgia. >> This person was injected with the cells on Friday. >> >> The FDA first approved this clinical trial in January 2009, but later >> required further research before the study could proceed. The FDA gave final >> approval in July of this year. This allowed the company to begin searching >> for the first patients who might qualify for this phase 1 clinical trial, >> which means scientists are trying to determine the safety of introducing >> these cells into a human. >> >> To be eligible, patients have to have suffered what's called a complete >> thoracic spinal cord injury, which means no movement below the chest. While >> patients can still move their arms and breathe on their own, they are >> complete paraplegics; they have no bowel or bladder control and can't move >> their legs, Okarma explains. >> >> The injury to the spinal cord would have to have occurred between the >> third and tenth thoracic vertebrae and the patient has to be injected with >> the stem cell therapy, called GRNOPC1, within seven to 14 days after the >> injury. "At the time of the injection, they [the cells] are programmed to >> make a new spinal cord - they insulate the damage [to the spinal cord]," >> says Okarma. The cells work just like they would if they were in the womb >> and building a spine in a fetus, Okarma explains. >> >> Embryonic stem cells are only four to five days old and have the ability >> to turn into any cell in the body. But the cells that the patient receives >> aren't pure human embryonic stem cells anymore. The cells in the GRNOPC1 >> therapy have been coaxed into becoming early myelinated glial cells, a type >> of cell that insulates nerve cells. >> >> "For every cell we inject, they become six to 10 cells in a few months," >> says Okarma. These cells can still divide some but will not become any type >> of cell other than glial cells, he explains. >> >> The Geron CEO likens what these cells are doing to repairing a large >> electrical cable. If the outer layer is damaged and the wire is exposed, it >> causes a short-circuit and the cable doesn't work anymore. In the case of a >> spinal cord injury, these new stem-cell derived glial cells creep in between >> all the fibers and rewrap the nerve with myelin, which is like patching the >> cable. The goal is to permanently repair the damage that caused the >> paralysis from the spinal cord injury. >> >> "We're not treating symptoms here - we're permanently regenerating >> tissue," says Okarma. >> >> He adds that the goal of this stem cell therapy is to shift the outcome >> for someone who has just suffered a serious spinal cord injury, and go from >> a place where there's no hope for improvement to a situation where they can >> respond to physical therapy. "If we could do that, this would be a >> spectacular result," Okarma says." >> >> >> MORE at site >> -- >> >> >
Re: [TMIC] First human injected in human embryonic stem cell trial
CBS NEWS TONiTE--Johnson Center has injected the first human with embrionic stem cells to repair the myelin sheath--with FDA APPROVAL--the initial testing is for newly injured subjects (7-14 days)and it is expected that results will show within two months. The Dr is highly optimistic. A second type of stem cell will be used for patients that have had the condition for months and even years. I have this recoded on my DVR==contact is John Center.com On Mon, Oct 11, 2010 at 12:31 PM, Akua wrote: > > > http://pagingdrgupta.blogs.cnn.com/2010/10/11/first-human-injected-in-human-embryonic-stem-cell-trial/?hpt=T2 > > First human injected in human embryonic stem cell trial > > "After years of animal trials, the first human has been injected with cells > from human embryonic stem cells, according to Geron Corporation, the company > which is sponsoring the controversial study. > > "This is the first human embryonic stem cell trial in the world," Geron CEO > Dr. Thomas Okarma tells CNN. > > Geron is releasing very few details about the patient, but will say that > the first person to receive cells derived from human embryonic stem cells > was enrolled in the FDA-approved clinical trial at the Shepherd Center, a > spinal cord and brain injury rehabilitation hospital in Atlanta, Georgia. > This person was injected with the cells on Friday. > > The FDA first approved this clinical trial in January 2009, but later > required further research before the study could proceed. The FDA gave final > approval in July of this year. This allowed the company to begin searching > for the first patients who might qualify for this phase 1 clinical trial, > which means scientists are trying to determine the safety of introducing > these cells into a human. > > To be eligible, patients have to have suffered what's called a complete > thoracic spinal cord injury, which means no movement below the chest. While > patients can still move their arms and breathe on their own, they are > complete paraplegics; they have no bowel or bladder control and can't move > their legs, Okarma explains. > > The injury to the spinal cord would have to have occurred between the third > and tenth thoracic vertebrae and the patient has to be injected with the > stem cell therapy, called GRNOPC1, within seven to 14 days after the injury. > "At the time of the injection, they [the cells] are programmed to make a > new spinal cord - they insulate the damage [to the spinal cord]," says > Okarma. The cells work just like they would if they were in the womb and > building a spine in a fetus, Okarma explains. > > Embryonic stem cells are only four to five days old and have the ability to > turn into any cell in the body. But the cells that the patient receives > aren't pure human embryonic stem cells anymore. The cells in the GRNOPC1 > therapy have been coaxed into becoming early myelinated glial cells, a type > of cell that insulates nerve cells. > > "For every cell we inject, they become six to 10 cells in a few months," > says Okarma. These cells can still divide some but will not become any type > of cell other than glial cells, he explains. > > The Geron CEO likens what these cells are doing to repairing a large > electrical cable. If the outer layer is damaged and the wire is exposed, it > causes a short-circuit and the cable doesn't work anymore. In the case of a > spinal cord injury, these new stem-cell derived glial cells creep in between > all the fibers and rewrap the nerve with myelin, which is like patching the > cable. The goal is to permanently repair the damage that caused the > paralysis from the spinal cord injury. > > "We're not treating symptoms here - we're permanently regenerating > tissue," says Okarma. > > He adds that the goal of this stem cell therapy is to shift the outcome for > someone who has just suffered a serious spinal cord injury, and go from a > place where there's no hope for improvement to a situation where they can > respond to physical therapy. "If we could do that, this would be a > spectacular result," Okarma says." > > > MORE at site > -- > >
Re: [TMIC] Re: Ignorant Therapists
That is exactly my experience--Now that I have moved I cannot find a doctor who knows more about TM than I do. On Sun, Oct 10, 2010 at 8:54 AM, Akua wrote: > She did tell me that if I found anything to try that we have not tried >> to bring it to her and we would try it. Thats a lot in some circumstances >> where you are told to just be still. >> > > YES! Agreed, not great but way better than GP and crew who REFUSED to > renew my Naltrexone.. > ... but you know, slow and aching and horrible as it's been, i would not > have found the neuro who has now led to the physiatrist > > > >> I just want a plate of stem cells with cheese please! >> > > Me too! I'm fixable! I want to be fixed I want to walk again. Now! > Akua > > > -- > >
Re: [TMIC] 18 year Anniversary
cindy-- you give me someone to look up to--I hope I can do half that good On Sun, Oct 10, 2010 at 11:31 AM, Deborah Nord Capen wrote: > For those of us who are NOT fortunate enough to know Cindy personally, > you need to know that she is confined to a wheelchair, but does not let the > wheelchair confine her. She leads a very active life, serves on the board > of an independent living center, runs the Southern California TM support > group, goes to just about every Angels baseball game that she can get her > hands on tickets for, drives herself everywhere in her van that is adapted > with hand controls – does NOT let TM rule her life! Cindy is also very > active in spinal cord research programs at UC Irvine, advocates for people > with disabilities whenever and wherever she needs to do so, and I get tired > just thinking about all that she does in a given day. > > > > I know that she lives through pain, all of the other issues that plague us > TM’ers, and with all the pain she endures, she is entitled to complain MUCH > MORE than she does. > > > > My life is richer because I can call Cindy “my friend”, and I never would > have met her had it not been for getting transverse myelitis. > > > > We love you Cindy! > > Love, > > Debbie > > > > > > *From:* Cindy McLeroy [mailto:cindymcle...@socal.rr.com] > *Sent:* Friday, October 08, 2010 11:14 AM > > *To:* tmic-list@eskimo.com > *Subject:* [TMIC] 18 year Anniversary > > > > I woke up this morning knowing there was something I should remember about > the day. Didn't remember what until I looked at the TMIC emails about 6 yr > anniversary. It was 18 years today that TM entered my life, but like so > many, I was out of town on a business trip to New Orleans. I live in So. > Calif. > > > > I have been in a wheelchair ever since with no sign of recovery. Lucky for > me it hasn't defined my life but has really presented a lot of new > opportunities and new friends-expectially those who also have TM. This > isn't to say there aren't days when the pain overwhelms me or the fatigue > takes over - well actually this is most days. But even tho I don't like > having TM, it has brought more positives to my life than I could ever > expected. > > > > Everyone enjoy "my" special day. > > Cindy McLeroy > > > > >
Re: [TMIC] Up or Down?
Based on what you guys have written, my son went out last night and bought me a recliner that is electrically operated. He also raised it up to a height that matches the wheel chair so I can use the slide board to get in and out. THANKS !! On Wed, Oct 6, 2010 at 5:38 AM, john snodgrass wrote: > more good info,,, > > thanks Akua > > --- On Tue, 10/5/10, Akua wrote: > > > From: Akua > > Subject: Re: [TMIC] Up or Down? > > To: tmic-list@eskimo.com > > Date: Tuesday, October 5, 2010, 9:22 PM > > I second John's thoughts. > > Up AND Down. Up to do as much as you can. Down when you're > > tired. > > > > I had doctors --- and they told me nothing about nothing. > > > > Listen to your body, even when it's yelling at you. Learn > > its new language. > > > > When my foot swelling and flopping annoy I return to the > > boots I > > was given back in the nursing home. They're annoying to > > strap myself > > in, but when I wake, I have pretty feet and > > skinny toes again. > > > > As look into special pressure relieving boots --- > > just found the name: > > orthotic boots > > > > http://www.medicalsheepskins.com/medicalfootcare.htm > > http://www.jansenmedical.net/heelboot-orthotic-boot.html > > > > prevent foot drop: foot drop boot > > http://www.colonialmedical.com/product.php?productid=20033 > > foot elevator > > -- > > > > > > >
Re: [TMIC] Fwd: Good Idea!
Osama's Armory On Mon, Oct 4, 2010 at 10:04 AM, wrote: > > > > -- Forwarded message -- > From: avi2...@aol.com > To: asaintof...@hotmail.com, anf...@aol.com, bettysilver2...@aol.com, > bgunny7...@aol.com, b...@juno.com, cindy7...@aol.com, calspee...@aol.com, > conc...@aol.com, debsa...@aol.com, dlafor...@aol.com, rtfos...@yahoo.com, > goins1...@aol.com, hhp1...@aol.com, jaks...@aol.com, jec...@airfrance.fr, > jenn9...@aim.com, kf...@ejlawsrq.com, kl...@aol.com, ladyjoker...@aol.com, > lde...@aol.com, lindalee5...@aol.com, loissimone...@bellsouth.net, > marshapaint...@yahoo.com, mavbearcollec...@aol.com, pinseekin...@aol.com, > rkron...@warwick.net, shannon...@aol.com, silver...@aol.com, > sunbird...@aol.com, swampygirl1...@aim.com, topproducer2...@yahoo.com, > twof...@commspeed.net, vrs...@yahoo.com, wbret2...@yahoo.com > Date: Sun, 3 Oct 2010 14:05:11 EDT > Subject: Fwd: Good Idea! > > > > -- > From: gordi...@att.net > To: Undisclosed-Recipient:; > Sent: 10/2/2010 7:12:06 P.M. Eastern Daylight Time > Subj: Good Idea! > > > > *From:* ss > *Sent:* Friday, October 01, 2010 6:19 PM > *Subject:* Good Idea! > >** > > *I must admit that when I read the 1st paragraph I couldn't > understand why anyone would want anything built on 9/11 Ground Zero. The > next paragraph peaked my interest. The remainder is thought provoking. * > > > > > > > > *TOLERANCE* > > > *I am perplexed that so many people are against a mosque being built near > Ground Zero. I think it should be the goal of every American to be tolerant. > The mosque should be allowed, in an effort to **promote tolerance**. > > That is why I also propose that **two gay nightclubs** be opened next door > to the mosque thereby promoting tolerance within the mosque. We could call > the clubs "The Turban Cowboy" and "You Mecca Me So Hot". * > > * > Next door should be a **butcher shop** that specializes in pork and have > an open barbeque with spare ribs as its daily special. Across the street a > very **daring lingerie store** called “Victoria Keeps Nothing Secret” with > sexy mannequins in the window modeling the goods. > > Next door to the lingerie shop, there would be room for an **Adult Toy > Shop** (Koranal Knowledge?), its name in flashing neon lights, and on the > other side a liquor store, maybe call it "Morehammered"? >** > It just makes common sense that individuals or groups that are clamoring > for tolerance would of course appreciate the opportunity to demonstrate > their tolerance. If you agree in **promoting tolerance** and you think > this is a good plan, pass it on.* > > > > > > *PS: Anybody have a catchy name for the nearby Synagogue that will be > built? * > > > > >
[TMIC] Up or Down?
Is it better to spend more time up in my wheel chair or lying in bed? My legs don't work at all and I want to know the best way to heal--I have noticed thatr my feet do swll when I am in the chair for hours at a time. I have no insurance so I can't talk to a doctor about this. Jim in Hawaii
[TMIC] Anyone else in Hawaii
I would like to know if I am the only person with TM in Hawaii. I would like to correspond with TM patients in my state.
Re: [TMIC] It's my birthday
I'm Jim and I've only had TM for 6 months. I'm 63 and have led a very active life here in Hawaii. In a two day period in March I became paralyzed from the waist down. No bladder or bowel function. A week of Solu-medrol and then a week of IVIG treatment that cost 27,000 and no results. Neither my wife or I are able to work (she cares for me) and we are going into bankruptcy. We've lost the house and live with my son. I cry for my wife who has to suffer with me. I pray and pray for relief. I have almost committed suicide several times but leaving my wife that way has held me together. I can not imagine living like this for 10 or more years. Kudos to all of you who have managed some level of happiness. On Mon, Sep 27, 2010 at 12:41 PM, wrote: > Yes we all have days like this... my 6 year "anniversay" is comming up > oct 6th and it's hard not to dwell on how my life changed so much within a > few hours... to go from being so active to tired just getting out of bed and > try to explain to others how I feel. my TM family gets me thru so much! > > > - Original Message - > From: "john snodgrass" > To: rn11...@yahoo.com > Cc: "transverse myelitis" > Sent: Monday, September 27, 2010 5:56:11 PM > Subject: RE: [TMIC] It's my birthday > > Rob is right. > yesterday i had a terrible day. wanted to go visit my 79 year old dad and > couldn't. > chair to bed all day! > > there was an accident below my home Saturday evening and i wanted to hurry > to see if i could help or was it family or what and i almost fell down a lot > of times! > if i wanted to be sure on my feet i should use a stick or a walker but i am > hard headed and wont s i look like a drunk man walking. > > today was a little better but still a lot of pain. > > I am @ 2.5 years into this thing and there was one day when i was so > frustrated that i cried. > > sometimes you have to if you have to. > > i think self pity is natural when it comes to health problems. > > anyone who would cast a bad light on someone for that just may find > themselves in a worse condition. > > not long after I had my virus in my spine i found out that one of my best > friends had a virus that went to his heart. > > he is still functioning who who woulda thunk it! > > sometimes i just want to walk right out of this body. > > then i think of my loved ones and friends,and of course you folks that > fight this same fight with me. > > keep on the firing line. > > > > tomorrow is a better day. > > > --- On *Mon, 9/27/10, rn11...@yahoo.com * wrote: > > > From: rn11...@yahoo.com > Subject: RE: [TMIC] It's my birthday > To: "Robert Pall" > Cc: tmic-list@eskimo.com > Date: Monday, September 27, 2010, 5:39 PM > >Rob, >I think everyone has days that tm is overwhelming. There have been > several days lately that I've cried about all that I lost when tm struck me > on 8/13/95. Except for those here on the list,nobody "gets it" and how hard > just getting out of bed and functioning every day is. > I thank all of you for being here. >Yes Rob,tomorrow will be a better day! > Cheryl in Easthampton,MA. > > > --- On *Mon, 9/27/10, Robert Pall * wrote: > > > From: Robert Pall > Subject: RE: [TMIC] It's my birthday > To: alle...@aol.com, tmic-list@eskimo.com > Date: Monday, September 27, 2010, 3:21 PM > > What a coincidence ...today is my Bar Mitzvah ...it is exactly 13 years > for me today...not sure how to celebrate. I came down with TM one week after > my 50th birthdaytherefore when i had my big 10 year mark it was the > first time I allowed myself self pity...I broke down for a day or two and > just felt so much self pity..and then i realized how many wonderful > things I have and I went back to my normally positive attitudebut today > after 13 years I just think when I go home I will have a good cry > & allow myself tonight to feel sorry for myself. Tomorrow will be a better > day! > Ella ...give yourself a little time to grieve for what you have lost and > then do your best to put it behind you... > > All the best! > Rob in New Jersey > > -- > *From:* alle...@aol.com [mailto:alle...@aol.com] > *Sent:* Monday, September 27, 2010 2:28 PM > *To:* tmic-list@eskimo.com > *Subject:* [TMIC] It's my birthday > > Hello everyone, > Today I am TM 10 and not sure of how I feel. The fact that it is cloudy out > doesn't help either. Ten years ago I went into a coma and awoke weeks later > not able to move anything, not even my head. Eventually I got everything > back but my legs and what happened in the 90's. Am I depressed? I say I am > but doctors don't think so, just a bit of sadness. I think I live 80% in my > head so I don't dwell on the pain below and everything else that goes along > with TM. Am I scared? Sometimes when I think yes this is my new life knowing > how bad I want the old. You guys are a God-send and the support we give each > other is beyond words. Thanks, I thought I was feeling sorry for myself b
