Re: [TMIC] Thanks!
In a message dated 9/13/2007 4:56:14 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Thanks Jude... and the other folks who have welcomed me into this community. I have been lurking and learning about how to cope with TM since July and I have to say you are an amazing group of people. I don't have much wisdom to offer (okay, I did email Frank about Hen3ry and Tom Lehrer as my husbands a fan and has the complete collection) but that's about it. and I haven't tipped over backwards in a wheelchair yet but if my sense of balance takes one more hit I'm gonna need a cane to avoid embarrassing encounters with lampposts and local officers (this college town has a real reputation for being a party school) I see my neuro Oct 1 and am trying to think of all the questions I could possibly write down to ask him about meds, treatments, recovery etc. Anybody have suggestions for my list? Mindy the artisan Mindy, We are all so happy that you decided to make yourself knowns to us. It is a gift to meet one more unfortunate TM'er, willing to share a bit of herself, her disease experience, and her ability to feel free enough to discuss upcoming events and the willingness to ask for help and ideas regarding her first trip to the neurologist. I did my forte'...that of welcoming you and helping you feel safe enough to open up and ask the questions you need help with. Now it is up to some of the others to help with your questions because I know next to nothing about who runs what, who is going to give you an idea of what to ask the neurologist when your time for your appointment nears, and all of that kind of stuff. Best of everything, my dear. Make a list and stick to it.! Jude, from Michigan Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's new at http://www.aol.com
Re: [TMIC] OT - looking for
In a message dated 9/14/2007 12:50:43 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Has anyone heard from Wim in Holland lately? I haven't seen any posts that I can remember? He usually has a lot of input in our emails Namaste, Bernie Six years on this List and I have thought Wim was a woman. Six years! And, I am only now finding out...how strange. No wonder our emails have been so weird. Hey wim, From now on my email will make more sense as I will ask you questions regarding TM problems relating to men instead of women. I have not heard anything from Wim in several months and have heard from Errol only once when I asked him some questions in private about Mavis. I had been under the impression, again for six years, that Errol was the one with TM, not his wife. I am enchanted by his huge encyclopdia of a brain and the fact that he so humorously tried to hide it and share his wealth of knowledge at the same time. Maybe he and the missus are having a TM/MS moment and the bad time that comes along with it. Frank would be the person to ask about Errol. I believe they are buddies. Really, anyone who has been on the List for a long time...Jim Lubin especially might know. Best of luck at finding both Errol and Wim. Please keep us updated regularly.. Sincerely, Jude, female, Michigan Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's new at http://www.aol.com
Re: [TMIC] Hi Stacy
In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Stacy and Regina, Whatever you both do, please stay with us and give us a good try. I'm relatively certain that we will help you and I'm sure that in turn, we will learn something from the experience you have gone through. Best of everything to you both, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's new at http://www.aol.com
Re: [TMIC] Hi Stacy
Hi Jude, I'm pretty OK. I was trying to give Regina a glimmer of hope. I believe that any of us that have to deal with the physical/mental after affects of TM or ADEM are brave. I know I will get out of this bed soon. I won't be the same as I was before the spinal fusion but I still have my arms and with work, I will be more independent again. I was going to school for social work so I can help others with disabilities and plan to finish when I can. I did have a down time in May before I broke my back when everyone was graduating bc I was also supposed to graduate and I still have 2 years left. I am only 33 but it does get discouraging to think I'll be 35 before I'm finished. I have a lot of debt to pay off and want to one day own a house and have it paid off before I retire which seems it might be impossible but in reality I know its not. I think we do learn from each other and without this and that quadlist, I would be lost without knowing what to do. I do more reading here hence the lace of replies but it doesn't mean I don't get anything out of it. Thanks to you all, Stacy - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Saturday, September 15, 2007 5:28 AM Subject: Re: [TMIC] Hi Stacy In a message dated 9/14/2007 4:19:05 PM Eastern Daylight Time, [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] writes: Stacy and Regina, Whatever you both do, please stay with us and give us a good try. I'm relatively certain that we will help you and I'm sure that in turn, we will learn something from the experience you have gone through. Best of everything to you both, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT -- See what's new at AOL.comhttp://www.aol.com/?NCID=AOLCMP0030001170 and Make AOL Your Homepagehttp://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169.
Re: [TMIC] OT - looking for
Errol IS the one with TM, not Mavis. :-) I heard from him recently when I sent him and then later Mavis birthday greetings and he responded each time. He said he had had a hernia operation in April and they are in the process of moving his mother to their town. His grandson is 14 months old now and doing well but will have to have his aortic valve replaced next year due to growing out of it. Overall they are doing well. His e-mail is the same: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 9/15/2007 5:20:06 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: I had been under the impression, again for six years, that Errol was the one with TM, not his wife. ** See what's new at http://www.aol.com
Re: [TMIC] I'm trying to fin an old friend
Hi Barbara, I am going for the Invacare M51, even though they 'said' they didn't have a demo for me to try. They brought over a M41, and i did ok on that. The vehicle part is going to be a little tricky. I have a 2000 Subaru Forester, which I finally paid off this year. I thought it would be big enough to carry the wheelchair inside, but apparently it's not. So I am going to have a power lift attached to the back of my car, which will hold the chair on the outside back of the vehicle. This means having a trailer hitch installed..and the tricky part is that the 'tongue weight' capacity is around 350 lbs with a class II trailer hitch. The chair weighs around 200 lbs, and the lift, made by a company called 'Freedom Lift' weighs about 100 lbs. The problem is, what happens if you hit a pothole or big bump, could be a disaster. I cannot afford to get a different vehicle, so I'm just going to have to be very careful. I don't need to travel far anyway. In your Trailblazer, does your chair fit inside? Also, did your insurance cover any of the vehicle modifications? I don't think mine will. Also, I am being made to have physical therapy in order for the ins. to pay for the chair. I guess they require a report from a physical therapist. I think this is ridiculous after I've been on disability for so many years. Quite a racket. I'm glad the Lyrica is working for you. I tried it for a week and I could not tolerate the side effects unfortunately. Same with Cymbalta, but I might give it another try. I never tried Neurontin, and I wanted to, but my neurologist didn't think it was right for me. ;-/ Thanks for your kind words. Hugs, Kevin [EMAIL PROTECTED] wrote: Hi Kevin, I am really hoping that this scooter will give you the freedom that you need to have a decent quality of life going forward. Will you need to get a new vehicle in order to put a lift on the rear to carry it or are you in good shape there? We just finished getting both vehicles done here, and buying a used lift. We had to have some work done on the lift as when Pete bought it he didn't realize that it was fairly old, and the swing arm that we needed wasn't able to just mount to it. It had some adjustments that needed to be done, so it went off to a machine shop and then got some wiring done on the vehicle. It has to be hard-wired, which we didn't know. We have a Chevy Trailblazer that had a hitch on it, so figured we'd be ok. No way. It needed to be hard-wired to the battery separately from the original wiring to that hitch or it would throw fuses right and left. You learn these things after the fact. I'm doing ok, trying to adjust to this conversion from Neurontin to Lyrica. It's not going as good as I had hoped, as my body is in a good deal of pain this week as I start to lower my dose of Neurontin. I added in the Lyrica for the past 3 weeks, and after dealing with severe fatigue, it adjusted pretty well. I loved the mental clarity, it was such a welcome change. So, my body loved the addition of the Lyrica but doesn't like the reduction of the Neurontin. I know this will be an adjustment, but it's just not fun right now. Gotta go, take care, Hugs, Barbara See what's new at AOL.com http://www.aol.com?NCID=AOLCMP0030001170 and Make AOL Your Homepage http://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169.
[TMIC] I'm back home
Hello to everyone...I've missed you all. My urostomy surgery was much more than I had planned on it being. I also got a stah infection (my first ever) very soon afterwards and he had to open up my womb. A womb vac (which is used alot anymore) was connected to the tubing, etc. and other medical stuff. They say the vacs cut your healing time in half. My womb now is like 1/2 inch deep, so he might just stitch me up next week and no more wound vac. This is my lst day out of bed. My daughter and son-in-law are here. So, thought while they are showering I'd drop you all a line. Hope folks are doing ok. later - Natalie M. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] my introduction to the group
In a message dated 9/11/2007 11:16:18 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: I’d also love to hear if anyone else has had Lhermittes sign and if their symptoms improved over time? Hello Mindy, I cannot be much help on this but I had L'Hermittes symptoms but blew it off thinking I had moved a body wrong. I have not felt it since TM and don't recall how long they lasted before TM as mine was diagnosed while in a coma and lots of memory lost beforehand. So, in my case, yes the symptoms improved. Ella ** See what's new at http://www.aol.com
RE: [TMIC] Question - Spinal Stimulator
That's interesting that you only take the Amantadine 2X a day for 5 days a week. I was told 2X a day period. It did work great for 2 months but it's like my system started to reject everything. First the Amantadine started giving me flu like sysmptoms - headache, sick to my stomach, ackey thoughout my body, coughing, etc. I stopped the Amantadine and within 48 hours, everything stopped. Then 2 days latter, the problem with the tens pads started - big hives in some spots and a rash in most of the spots. I'm now peal the gel pads off and use personal lubricant and paper tape on the pads. So far so good. My neruo put me on the provigil which I've been on for the past 3 days. Eventhou, I take 100mg in the morning around 9 a.m., I can't fall asleep until 2 or 3 in the morning and don't wake up until 9 or 10 in the morning. I just hope that doesn't go on. I just might stop the provigil, and use l-carnitine and an amino acid capsule. They helped even before the Amantadine. Thank you for the info. Prayers and thoughts to you and yours, Candy K. -Original Message- From: Butcher, Bernie (SFS) [EMAIL PROTECTED] Sent: Sep 14, 2007 10:15 AM To: cakalley [EMAIL PROTECTED], transversemyelitissupport [EMAIL PROTECTED], tmic-list tmic-list@eskimo.com Subject: RE: [TMIC] Question - Spinal Stimulator Hi Candy Yes, I tried Provigil and it seemed to work great sometimes other times, nothing (although my insurance paid zero for it - I got some samples from my MD). Then my neuro put me on Amantadine - initially it worked great, my legs felt lighter. I take it twice a day, five days a week I think it helps. BERNARD BUTCHER -Original Message- From: cakalley [mailto:[EMAIL PROTECTED] Sent: Thursday, September 13, 2007 3:29 PM To: transversemyelitissupport; tmic-list Subject: [TMIC] Question - Spinal Stimulator I just returned from my Nuro. The amantadine after nine weeks, was giving me terrible flu like symptoms. He gave me 4 weeks of provigil. Has anyone used provigil? My tens pads had caused a rash everywhere I put the pads. However without the tens, my spasms and cramps had returned with a vengance! My Neuro had 2 suggestions, use the tens but go see an allergerist to see if there is some special creme to control the rash OR have an operation for a permanent spinal stimulator. My question is has anyone had the spinal stimulator? If so, what was the recovery time? How does it work? Prayers and thoughts for all, Candy K. Candy K. Candy K.
