Re: [TMIC] Donna Jackson Nakazawa
Thanks for the names of the books. I'm on my way to the Library today as it happens. Heather in Calgary - Original Message - From: T Kanon To: tmic-list@eskimo.com Sent: Monday, August 11, 2008 8:31 AM Subject: [TMIC] Donna Jackson Nakazawa The names of her books are: 1.The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance 2. The Cutting Edge Science that Promises Hope Tobe :O) No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1603 - Release Date: 8/10/2008 6:13 PM
Re: [TMIC] dr. kerr
Wow Tobe, What a great opportunity. Hope you are able to go. Please let us know how it was. Heather in Calgary - Original Message - From: T Kanon To: tmic-list@eskimo.com Cc: [EMAIL PROTECTED] Sent: Sunday, August 10, 2008 6:31 AM Subject: [TMIC] dr. kerr Hello Everyone, New York has a famous Y in Manhattan appropriately called the 92nd Street Y. I get the catalogue and was perusing it the other day, and lo and behold what do I see On Sunday February 8, 2009 there will be a discussion on the autoimmune epidemic. One of the guest speakers our own Dr. Kerr. The other speaker is Donna Jackson Nakazawa, an author of books on the subject. It is a long way off however these fill up fast. I hope to attend. Stay well. Tobe Brooklyn NY No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1602 - Release Date: 8/9/2008 1:22 PM
Re: [TMIC] Air conditioning
My sister in Ontario has MS. I know that if people are asked to stop using air conditioners during a real hot spell that she doesn't have to due to her condition. I will have to ask her if she was ever able to claim the air conditoner off on her taxes. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: Butcher, Bernard G (NY80) [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Friday, August 08, 2008 5:22 PM Subject: Re: [TMIC] Air conditioning Barney I remember someone posted regarding your question and I hope they respond to the group with the details. Patti - Michigan (I'm going to try thr archives) Butcher wrote: Hello all - I read somewhere that if you get a letter from your doctor stating that you must have air conditioning because of your medical condition (I was diagnosed with TM, now MS) you can write it off as a deduction on your taxes. Anyone hear this or claim a/c? Barney No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1601 - Release Date: 8/8/2008 9:02 AM
Re: [TMIC] inquiry re: heat
Hello George in Colorado and Laura in North Carolina, I live in Calgary Alberta. I find the heat and hot sun just too much for me in the summer time. I too get loggy with the heat. I spend those days indoors with the doors and windows open as I like to feel the summer but can't stand to be 'out in it' either. My whole body gets 'very very tired' easily in the heat. A few weeks ago we were visiting friends and I had on capri pants and we were sitting having coffee on their deck in the shade. The sun moved around to us and I had on a hat, sunglasses and thought oh it is morning and the sun is not too bad yet. But after 10 mins in the sun I had to get out of it. My legs turned mottled red and white through my capri's in the sun. I was affected with TM at T8-T10. Feeling in legs are spotty at best. So now I know not to sit in the sun even early morning sunshine. I read somewhere that your nerves do not conduct messages very well when it is too hot. The nerves get tired much easier. At least that is my layman's take on it. When it gets cold my muscles just seize up and don't want to work. So too hot or too cold is bad for we TMer's. I too enjoy the cooler days of spring and fall. I guess the ideal temp for me is between 60F and 75 F. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, August 02, 2008 12:37 PM Subject: Re: [TMIC] inquiry re: heat On Sat, Aug 2, 2008 at 11:49 AM, [EMAIL PROTECTED] wrote: I'm fairly new ... diagnosed with TM 18 months ago. I can still get around with a cane during the morning but I end up sittling a lot the rest of the day. I have a question about heat. It seems to me that I get immobile quicker when I get hot than not ... like sitting in a chair in the sun and then I have difficulty moving my legs.Is this common? - George in Colorado I am mostly recovered from a mild case of TM nine years ago. But still I cannot tolerate heat for any length of time. If I am outside when it is very hot out I pay the price of feeling very weak and exhausted. Heavy limbs. Feel like I am walking through wet cement. Here in southern North Carolina we have long, hot summers so I spend more time indoors in the summer and then enjoy outdoor activities during the spring, fall and our lovely mild winters. Laura in NC No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1587 - Release Date: 8/2/2008 5:30 PM
Re: [TMIC] swelling in foot and ankle
Mom Maw in NC I too experience swelling in foot and ankle but only after I've been on it all day. The swelling goes down when I elevate my feet during the day and when I get upin the morning. I think this is something you need to check out with your doctor. This could be totally unrelated to TM. Perhaps you are retaining water for other reasons. Keep us informed as to what you find out as this may help others here too. Heather in Calgary - Original Message - From: jgrubb1 To: tmic Sent: Thursday, July 31, 2008 2:54 PM Subject: [TMIC] swelling in foot and ankle Hi Everyone, My right foot and ankle have been swelling everyday now. (this is the side affected by TM) It used to be only after I had been up all day but now I wake up with it swollen. Has anyone else experienced this? Thanks for your reply. Mom Maw in NC No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1587 - Release Date: 8/2/2008 5:30 PM
Re: [TMIC] TENS
Gerry, I know that some on here use a TENS machine. Can't recall just who it might be though. I had physio person use TENS machine on me back in 1990 for herniated disc problems. Then in 1991 to 1992 and again in 1994 for 2 different car accidents. It really helped back then as it relaxed the muscles. Glad to hear it is helping you too. Heather in Calgary - Original Message - From: Gerry Surette [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, July 26, 2008 2:39 PM Subject: [TMIC] TENS A few weeks ago when my physio therapist was here I had a spasm in my right leg One could see my muscles protruding out of my leg. Anyway she said she was happy to see it. I certainly didn't share her feelings. She then asked me if she could correspond with my neuro. I asked her why, It was then that she mentioned TENS Transcutaneous electrical nerve stimulation. She faxed a request for TENS My Neuro said that I was receiving the maximun meds my body could endure and gave her his blessing. My Physio was here yesterday and we tried it. It sure felt good very relaxing. She said it would help confuse my my pain nerves. thus reducung or eliminating my pain when I get a spasm. The purpose of this email is to ask one and all first if they have ever heard of it and secondly if so what were the results. thank you lol to all with TM. No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.6/1575 - Release Date: 7/26/2008 4:18 PM
Re: [TMIC] none
Hi Rick, Heather here in Calgary. It has been very quiet for quite a while. Guess nothing earth shattering happening. Sounds good about your new wheelchair. Red did you say? Wow. That is neat. I'm using the WalkAide. It is working really really well. My leg with the foot drop/ toe drop or whatever it gets called does not get as tired when I walk using it. I even changed the electrodes myself on the weekend. I was a little nervous to do it but it was a piece of cake. I can now take a walk around our neighbourhood and have seen how the trees have grown so much. I use my walker still but do not have to sit and rest as often and can walk farther and longer for sure. I'm so glad and sooo fortunate that I was in the right place at the right time to get accepted into this trial program about it. It is for the 3 year Clinical Trial. I asked the Orthotist 'what happens to it when the 3 yrs is up?' the last time I was there. She said that she is not sure but she has never heard of Aids to Daily Living ever taking any equipment back. I know they cannot use it for other folks either once I have used it. At least she figured that it would be mine to keep. It is going to be interesting to see in the 3 years if my front leg and foot muscles have been taught anything and perhaps will be strong enough to remember how to lift the toes without the WalkAide. For now, I just keep chugging along. Is your chair a power chair Rick? Bye for now, Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Thursday, July 03, 2008 8:47 PM Subject: [TMIC] none OK. Where did everybody go!
Re: [TMIC] Jasc Paint Shop Photo Album 5 images
Cindy, Thank you so much for sending the pictures. How great to see everyone. Heather - Original Message - From: Cindy McLeroy To: tmic-list@eskimo.com Sent: Monday, June 30, 2008 2:19 PM Subject: [TMIC] Jasc Paint Shop Photo Album 5 images Hi everyone. I just saw Debbie's note about the Seattle symposium. I can't make it this year, but I really encourage anyone who can go to go. You'll learn so much and met and make friends with so many new folks. I was just cleaning up my office (this is a two week project) and found these pictures. The first one is: starting with those standing, Chitra, Debbie Capen, Dr Kaplin, Dr. Kerr, Dr. Levy, and Dr. Pidcock. Sitting at the left is me, Cindy, and at the right is Paula Lazerri. The second picture has Jim Lubn, Cindy, Debbie and Sandy Siegel. The third picture is Dr. Kaplin, Dr. Pidcock, Dr. Kerr, Chitra and me. Thought everyone might enjoy seeing pictures. Cindy McLeroy - These photos were sent using Jasc Paint Shop Photo Album 5 software. Visit http://www.jasc.com for details. -- No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.3/1526 - Release Date: 6/30/2008 8:43 AM
Re: [TMIC] no subject
Hi Rick, Nice to see you back on line. Everyone has been very very quiet for several days. I know it is very very warm here in Calgary and I'm sure a lot of people are enjoying the nice weather everywhere we are on line. I do know that Jude wrote and she is very very ill. Here is her last e-mail sent yesterday. Heather in Calgary I am too sick to email right now. I may have to stop the pure oxygen machine for now. I have just slept for three days and cannot eat a thing. Peace Be With You, Judy Hoops 6067 E. Frances Rd. Mt. Morris, MI 48458 Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, June 29, 2008 6:13 PM Subject: [TMIC] no subject Dear friends. I am happy to say I'm back online. Please send me an e-mail to verify that I'm back on line. thanks. Rick PS if you don't mind. -- No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.3/1525 - Release Date: 6/29/2008 3:09 PM
Re: [TMIC] Rare Neuroimmunologic Disorders Symposium in Seattle, WA
Hi Candis I'm not going but I think Jeanne Rushton is going. I would love to have attended and met some of the people that are on-line here. I know you will meet lots of them. Especially, Jim Lubin, Sandy Siegel and his wife and Dr. Kerr. And many more others I'm sure. Heather in Calgary - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Saturday, June 28, 2008 1:17 PM Subject: [TMIC] Rare Neuroimmunologic Disorders Symposium in Seattle, WA Is anyone going to the Rare Neuroimmunologic Disorders Symposium in Seattle, WA? I have signed up but have not heard from them and it is almost 2 weeks away. I thought when I went in 2006, they sent me some info but my memory just isn't what it use to be with TM, meds, and age. I hope to meet some of the people that I see online. Candy K. -- No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM
Re: [TMIC] test
your test went through Kevin, Heather in Calgary - Original Message - From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Monday, June 16, 2008 4:25 PM Subject: [TMIC] test test No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1505 - Release Date: 6/16/2008 7:20 AM
[TMIC] (TMIC) Age at Incident
Hi there, I took the liberty of copying and pasting this information from the TM Forum. I read that Forum everyday and try and answer some of the questions people new with TM ask. I am not sure if many of the 'oldsters' in this group do that. I found the Forum so very helpful when I first was out of the hospital. Heather in Calgary How old were you when you got TM? 0-9 years old 3% [ 10 ] 10-19 years old 12% [ 33 ] 20-29 years old 14% [ 38 ] 30-39 years old 27% [ 71 ] 40-49 years old 20% [ 53 ] 50-59 years old 16% [ 44 ] 60-69 years old 3% [ 8 ] 70-79 years old 0% [ 2 ] 80 years old or higher 1% [ 3 ] Total Votes : 262 vote_lcap.gifvoting_bar.gifvote_rcap.gif
Re: [TMIC] Neurontin Pain
Hi Sal, I'm glad that not taking meds is working for you. I'm also very glad to hear that you are are now walking short distances. You have certainly come a long way. I currently take Gabapentin 2400mg, Baclofen 40mg and Zanaflex 4mg. I don't have to look at a clock to tell me that it is time to take the Gabapentin. My body tells me. My body from waist to toes becomes much more buzzy (is that a word) and the pain starts to climb. I can tell you without even looking at a clock that it is at least 6 or almost 7 hours since my meds which I try to take at 5 hr. intervals throughout the day. I currently keep in touch with Marieke in QC. She is a young woman in her early 30's who is now graduating as a nurse. She has had TM 4 yrs and took on the nursing challenge after she was paralyzed with TM. She takes many more meds than I do. I have talked to her about her dosage compared to mine and how I take s much less than she and much fewer types and I cannot tolerate higher levels of meds as the side effects outweigh the good at some point. We both agree that someone who is 30 yrs younger than myself can tolerate more meds in their system. I know you are even younger than she and I do applaud the fact that you have weaned yourself from taking meds to using only vitamins. However, that option is not open to all of us. As Robert says we are all have different tolerance levels and different levels of pain. Keep up your positive attitude as I know the rest of us try to daily. It is what keeps us all going. That and the fact that we have our TM family to share our ups and downs with. As for me, I'm going to try and plant flowers this weekend. I'll be tired but happy. ;) Heather in Calgary - Original Message - From: sal r To: Robert Pall ; tm Sent: Friday, May 16, 2008 8:26 AM Subject: RE: [TMIC] Neurontin Pain hey Robert, i definitely understand what you are saying. i am not saying to take herbal remedies i am saying to pshyc out your brain from thinking that taking heavy doses of meds calms your pain. taking pills is like smoking, your body just gets use to it because you eat at a set time everyday and if you dont get your fix then you start to feel pain. i bet if your doing an activity and lets say you forgot to take a dose of your meds. you would be fine. but as soon as you remember that you skipped a dose automatically your body goes into pain.the mind is bery powerful. Mind over matter. example: i was paralyzed from the jaw down and the doctors said i will never recover again and automatically just because he is a doctor my mind WAS set to always believe them. but after so many inspiring talks with people i said no, doctors dont know anything. so i set my mind to recovery mode and now i aml in a wheelchair but walking short distances with a walker. its what you train your mind to do and feel. Btw- just think about Christopher Reeves...its never to late to recover...I just care for everyone. Best of luck to you all. Robert Pall [EMAIL PROTECTED] wrote: Sal: I appreciate your view regarding medications and the option of using herbal remedies. I do not think there is any one answer that works for all of us. We all are somewhat different...if TM was like fingerprints there would be no 2 exactly alike. Considering there is no cure presently available the only thing we can do is pain management. I have been on almost everything...some have worked and I am still on them and other's I have tried and felt the problems outweighed the benefits. I am certainly willing to try herbal remedies ...heck I am willing to try anythingbut I am quite certain that certain drugs such as Lyrica, 4-Aminopyridine and Diazapan have both helped me to deal with my condition and has allowed me to live a life as normal as possible. For me one of the most important things this list provides is members telling what medications has worked and not worked for them. Rob in New Jersey From: sal r [mailto:[EMAIL PROTECTED] Sent: Friday, May 16, 2008 9:46 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Neurontin Pain i dont know if people know but they recalled neurontin at certain doses. Those of you on Neurontin, the temporary relief of pain is not worth the long term side effects. If you ask me, I would say that most of you are on to much meds when not needed. doctors give you more then needed but it is up to you to lower the dose of the meds to a comfort level. your bodies have adapted to the meds so even if you dont need the amount your taking, when you lower it your brain automatically detects pain. basically what im trying to say is Its all in your head. I was on heavy dose of neurontin by the way, i was always fatigued, i got on lyrica was better...and now im off all and just taking a vitamin.
[TMIC] I have the WalkAide now for Clinical Trial
I was tested for this device mid-April. I was lucky and the orthotist found the correct nerve and the response that is needed. It pulls my toes up like it is supposed to. I returned to him a couple of days later and he told me that he was very excited as he had tested 12 people before me and only 2 were good candidates and I made #3. So that is exciting. However when I did see him that second time he said that the required paperwork and govt approval was still pending. He had received an e-mail just that morning. I was called on May 6 with another appt and this time everything was in order with the funding etc. So this past Monday the 12th I was given the WalkAide. It took 2 orthotists 2 hours to get it programmed just right. I didn't realize how it actually was lifting my foot until I saw it in their full length mirror. Without it turned on I hip-hiked and dragged my foot. With the device turned on I lifted my foot properly and did not hip-hike. That first day I went to the garden center, bought a few plants. Had a quick supper with hubby then we were off to a high school band concert. I must say that walking into the concert hall was easier. However, by the time I got home that evening about 10:30 pm I could have ripped the device off my leg and tossed it into a corner. I had had enough of the STIMS (electrical stimulations) for the day. I was in bed and asleep within a 1/2 hour. Got up 9 hours later. Yesterday morning I dreaded putting it on again as I wasn't sure about the Stims again. Well, it was not bad at all. I guess being tired was the big deal the night before. I had another appt with the orthotist yesterday morning. I told him when he asked that I had 'mixed reviews'. LOL Meaning works good but by the end of the day the nerve endings in anyone with TM are very touchy and tired. He explained that that was okay. It is a learning curve I guess. He is a very nice person and I know this will work well for me. I do find it a bit clunky but can work around it. I can turn it off when I am sitting having coffee with a friend or when seated having ameal etc. Anytime I am sitting I can do that as it will not then use battery etc. It only uses one AA battery. I am responsible for the cost of replacing the batteries (could be one in every 2 weeks or 1 every week - depends) and the cost of replacing the electrodes (once a week). I am s very fortunate that this is a clinical trial as I only have to pay the $500. fee and the rest is covered by the Alberta Aids to Daily Living. The full cost for this device is $4500. to $4700. Actually I am going to get in touch with the Insurance company that is with my job (I'm on LTD) and see if it is covered as in the letter I have with my receipt it is called an articulating ankle foot orthosis. Worth a try anyway. Heather in Calgary
Re: [TMIC] WalkAid - Foot drop - ADD Dexascan
When I was in hospital back in 2003 I was started on Vitamin D and Calcium. I was told to keep taking them. I take 1200 mg of Calcium every day and I can't remember the Vit D but I think it could be 400mg. Heather in Calgary - Original Message - From: jrushton To: [EMAIL PROTECTED] ; tmic Sent: Wednesday, April 23, 2008 7:51 PM Subject: Re: [TMIC] WalkAid - Foot drop - ADD Dexascan Barbara, did you ever notice when you talk out loud to yourself when you walk, you seem to 'work' better or am I the only odd one in the bunch?? As awkward as I walk (like a drunk) I really don't fall all that often any more like I did the first year. It throws everyone around me in a tizzy which is too bad. This brings up a really important thing... I just went in Monday and had a dexascan and sure enough, my bone density is not where it should be. I am 'osteopenia' which means if I don't start taking my calcium regularly, I'm going to be in the red zone!!! The vitamins were big and gaggy so I just put them on the back shelf but after seeing the scan out they came! These also have vitamin D which will help my body absorb the calcium. My right side is worse because it is the weakest and doesn't get the workout the way my good side does and it sure shows in the scan. I can't imagine what they would look like if I didn't do my water therapy as much as I do. Just a note of caution for anyone else who might be wimpy like me with their vitamin/calcium intake (not!)!!! Jeanne ---Original Message--- From: [EMAIL PROTECTED] Date: 4/23/2008 8:23:12 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] WalkAid - Foot drop In a message dated 4/23/2008 4:51:00 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Thanks, Rob...prayer is the only reason I am upright!!! Jeanne That just reminded me.. often when I lose my balance and begin to tip one way or another, my oldest son will say, Stay upright! and I'll say, That's one of my goals in life! Doesn't have anything to do with the topic at hand, but thought I'd share it. :-) Barbara H. http://barbarah.wordpress.com/ Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.3/1393 - Release Date: 4/23/2008 8:12 AM
Re: [TMIC] Misunderstood
No, not here. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: jrushton [EMAIL PROTECTED]; tmic tmic-list@eskimo.com Sent: Thursday, April 24, 2008 2:15 PM Subject: Re: [TMIC] Misunderstood -Original message- From: jrushton [EMAIL PROTECTED] Date: Thu, 24 Apr 2008 12:01:47 -0400 To: [EMAIL PROTECTED] Subject: Re: [TMIC] Misunderstood Name: unknown. Type: multipart/alternative Encoding: Length: 3.59 kB DOES ANYONE ELSE HAVE TROUBLE RECEIVING JRUSHTON'S EMAIL F -- No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.4/1395 - Release Date: 4/24/2008 7:24 AM
Re: [TMIC] WalkAid - Foot drop
Jeanne, Glad to hear that you are going to give it a try. I went last Tues and had the test to try it out. The Orthotist was quite excited that he found the nerve and could make it work for me and get my toes to life the way they should if you are a good candidate for it. He said I am an excellent candidate. It is approx. $4500. here too. However right now the Alberta Govt is willing to start a 3 year Clinical Trial and I am going to be in on it. I just have to wait now to hear from the fellow as to when it is to start. He figures it will be one day this week. Good Luck Heather in Calgary - Original Message - From: jrushton To: tmic Sent: Wednesday, April 23, 2008 12:34 PM Subject: [TMIC] WalkAid - Foot drop I just wanted you all to know that I've got an appointment next Tuesday to try the WalkAid (for foot drop) that one of you brought up. I sent for the info and they have a really good DVD to watch and got Jack and I pretty excited...enough that we did make an appt to see if it would work for me. They said they would know in just a few minutes whether it would work or not. They do not charge for the first visit since it's so expensive ($4707) and Medicare nor insurance covers it. I'll let you know how it works out. We're not sure if we can do it financially but at least we can see if it works. Jeanne in Dayton, WA -- No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.3/1393 - Release Date: 4/23/2008 8:12 AM
Re: [TMIC] New Medication
New MedicationHi Rob, I take 4 mg of Zanaflex at betime. I took a lot more than the 4 mg. when I was in the hospital and when I first came home. I had a problem at that time though as it screwed up my liver enzymes. I had to stop taking it. A different neuro started me back on it again about 6 months ago but at this lower dose. I have had my liver enzymes checked and since I'm not taking as much this time the enzymes are okay. One of the side effects is fatigue. I was supposed to take 2 mg at 6 pm and then the 4 mg at bedtime. I stopped taking it at 6 pm shortly after I started the meds as I kept falling asleep about an hour after taking it. It takes a while to get used to. I'm glad to hear that it works well for you and is giving you some relief. Heather in Calgary - Original Message - From: Robert Pall To: tmic-list@eskimo.com Sent: Wednesday, April 23, 2008 2:04 PM Subject: [TMIC] New Medication I just started a new drug to help relieve banding. The drugs name is Tizanidine or Zanaflex. Do any of you take it or have you previously taken it. I have just started and am not up to the normal dose yet.however I am finding a noticable improvement in the banding. It is interesting that when I first started taking Lyrica I also noticed an improvement that has since not been so pronounced! Thanks! Rob in New Jersey -- No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.3/1393 - Release Date: 4/23/2008 8:12 AM
Re: [TMIC] Foot Drop
Gunny, This is the same type of device I was trying to explain to you this past week. Only the one I'm talking about is called Walk-Aide. It has the electrode etc just like this one. It also stimulates the 'PERONEAL NERVE'. You told me that the peroneal nerve had nothing to do with helping the toes rise. BUT it DOES. I also checked out the website you sent me regarding muscle groups. It is good too. It also shows the 'peroneal nerve' and that it can help talk to the muscles in the ankle to raise the toes. I was tested on Tuesday and when I went back on Thursday I was told that I am a really good candidate. The orthotist was really excited about it. He had tested 12 people and only 2 out of the 12 were good candidates. I was the 13th. So now I think that might be my new 'lucky number'. The actual 'Clinical Trial' will not start until sometime next week. In these cases the orthotist HAS to wait until the official start time. This will be a 3 year trial. I am not obligated to continue the whole time. I can drop out anytime. Alberta government is authorizing a 'Clinical Trial' for the Walk-Aide. Apparently it was originally designed in Edmonton. However at that time the government would not authorize Clinical Trial. So the company went to the USA. This fellow I am going to has said that perhaps in time the muscles will be trained to lift on their own. I would love to believe that. I am just going to keep working with this and see how things go. I will keep the list informed. If you want to see the Walk-Aide here is the address. It is very similar. http://www.walkaide.com/index.html Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Thursday, April 17, 2008 2:53 PM Subject: [TMIC] Foot Drop I just got the last edition of action Magazine, from the United Spinal Assoc. There's an advertisement in there about a thing called NESS L300 for foot drop. It isn't an orthotic so there's no cumbersome plastic that wraps around your leg. It looks like there's an electical device that wraps around the knee, and another one that attaches to the shoe. The number to find out about it is 1-800-211-9136. They also have a web site at Bioness.com. It looks like it might send some kind of signal to the Peroneal nerve that controls the ankle. It's battery operated. What the hell, give it a shot. Gunny -- Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.1/1385 - Release Date: 4/18/2008 9:30 AM
Re: [TMIC] foot drop?
Hi Sal, Yes, it is. I have funtion of my foot and leg. My right leg is the weak one and I can lift it and move it but I have foot drop. I am going on Tuesday to an orthotist to check out something called a Walk-Aide. I posted a website for it and one gal on here has tried it but it didn't work for her. I am not sure if it will work for me but I am going to try. Guess it depends on whether this device can connect or jolt the peroneal nerve in the leg. I'll let you know if it works for me. Heather in Calgary - Original Message - From: sal r To: tm Sent: Saturday, April 12, 2008 8:48 PM Subject: [TMIC] foot drop? Is it possible to get foot drop if i have function of my foot? __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.13/1375 - Release Date: 4/12/2008 11:32 AM
Re: [TMIC] Prayer Request
I'm sorry to hear about your young sister Candy. Are you living close to her where you can go and see her? My thoughts and prayers are with you. Hugs, Heather in Calgary - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Thursday, April 10, 2008 11:57 AM Subject: [TMIC] Prayer Request I just learned that my baby sister, Deb St. John, was taken to the hospital yesterday. She has a brain tumor, doesn't reconize anyone, is having seizures. Trying to find out more info but at this time it doesn't look good. Please pray for her. Prayers and thoughts for you and yours, Candy K. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.11/1371 - Release Date: 4/10/2008 12:23 PM
Re: [TMIC] Need a little help
Need a little helpRobert, Here is a site that shows just where on the spine T8 - T12 is. http://www.makoa.org/scimap.htm Not sure if higher is better or worse. It just tells what parts of the body are affected. I think it also depends on how much initial damage is done by the inflammation as to how you are affected by the residual effects. My lesion was at T8 - T10. I am one of the walking wounded. Usually walk unaided in house but use cane if I am tired or under the weather. Use cane or walker outside of home. Wheelchair once in a while. Heather in Calgary - Original Message - From: Robert Pall To: tmic-list@eskimo.com Sent: Wednesday, April 09, 2008 2:45 PM Subject: [TMIC] Need a little help Just rec'd results of MRI (thorasic) and they show the lesions in the T8-T12 region. Even though I have had this condtion for more than 10 years I have never known my T score..is a higher # on the T scale better or worse? Thx Rob in New Jersey -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.10/1367 - Release Date: 4/9/2008 7:10 AM
Re: [TMIC] med question - meloxicam and baclofen
When I first came home from hospital I was on 80 mg of Baclofen and lots of Zanaflex (can't remember exactly) and with the Gabapentin at about 3600 mg I was a real zombie. It took a few years to get down to where I am now. I take 40 mg Baclofen per day (10mg every 5 hours) and then one 4mg tab of Zanaflex at bedtime. Have to be careful with the Zanaflex - liver enzyme problems. Heather in Calgary TM since Sept 2003 - Original Message - From: Gerry Surette [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, April 08, 2008 1:35 PM Subject: RE: [TMIC] med question - meloxicam and baclofen It is the opposite with me I have been on baclofin for approximately 5 years. I too felt stupid at the begining but taken in conjunction with zanaflex; I can't walk or function without them. It took approximately five changes in strengh before my neuro was pleased with the disage. The only side effects I now experience is dry mouth; The long term is that you must consult your neuro before stopping taken it; Once on it it is very dangerous to stop taken it; From: [EMAIL PROTECTED] To: randy rankin [EMAIL PROTECTED],Butcher, Bernard G (NY80) [EMAIL PROTECTED],TM Group tmic-list@eskimo.com Subject: RE: [TMIC] med question - meloxicam and baclofen Date: Tue, 8 Apr 2008 9:50:09 -0700 Yes. I can't take more than 10mg and was totally stupid at 20mg. However, I also find that pain makes me stupid since I can't concentrate on anything else. What a vicious cycle we're in! Patti Butcher wrote: Hi Patti - Do you find that Baclofen makes it difficult to think? I took it for a while, and it made me kinda stupid I couldn't do my crossword BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, April 04, 2008 5:43 PM To: randy rankin; TM Group Subject: Re: [TMIC] med question - meloxicam and baclofen Randy I had similar confusion with what I heard from various medical people. Dec 2003 my neuro rx'd baclofen for spasticity and the next day I had physical and occupational therapy. Both therapists told me I didn't have spasticity and wanted permission to talk with my neuro. So there I was in my TM stupor questioning who knew best. I started on the baclofen and have never discontinued it. My Neuro knew best. I am too flexible (rubbery) if I take over 10mg so he moved me to every six hours and that works for me. I couldn't have discribed it at well as Merieke's post, however, it's exactly how both the spasms and spasticity feel to me. Patti randy rankin [EMAIL PROTECTED] wrote: Ok - what's the scoop on these drugs. Have any of you all taken them? Did they help? Where there any significant side effects? I was sent to a bone doc. to have a look. He wants me to try baclofen for spasms, (i didn't know that I was having them - everyone else says that I'm not have spasms - I'm so confussed on the term spasms. - first neuro talked about my legs being spastic because they wouldn't move - he pick them up and the right leg would stick in mid area lol - he'd have to push it back down. When I mentioned spasm later, everyone would look at me oddly and say that I wasn't having spasms. Now this guy is giving me meds for spasms and says that my right leg shows signs of spasticity) He said my vert was great - mild degeneration in mid T and at L-5 S-1 - which I already knew about. The 'arthritis' is genetic/ getting older he said - but it is unusual for my age. He said my 2001 car accident didn't have anything to do with it - but my chiro told me in 01 that it would come in time because it almost always shows up in a few years after a major collision. Anyway - what's the scoop on all these meds. before I decide to go ahead and take them I just wanted find out if it is worth the time. - You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM
Re: [TMIC] queston
Wow Linda, I wish there were days when I didn't feel the burning and tingling. It has never gone away even with meds. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Friday, April 04, 2008 4:48 PM Subject: Re: [TMIC] queston I think it is so strange that sometimes I feel good and other days I have burning and tingling. What makes us feel so different if there is no change? I cannot understand that at all. I have had MRI's every year for the past 5 years and as far as lesions and spots on my brain goes, nothing has changed. Linda in Pa -- Planning your summer road trip? Check out AOL Travel Guides. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.5/1359 - Release Date: 4/4/2008 8:23 AM
Re: [TMIC] queston
I ditto your sentiments Rob. Same Same for me. Heather in Calgary - Original Message - From: Robert Pall [EMAIL PROTECTED] To: Akua [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, April 02, 2008 11:45 AM Subject: RE: [TMIC] queston Funny how one persons good news is another prsons bad. Whereas Jeanne is excited (rightfully so) that she can feel temperature...I am upset that my left leg that has never in 10 years felt temperature is now freezing or burning...I am not sure how to describe it other than lousy! Rob in New Jersey -Original Message- From: Akua [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 1:40 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] queston Good news!!! I've been noticing a change where I can feel temperature on my skin on the left side which is the one that has never been able to feel temps! I felt a cool sensation when I was taking off my clothes and then felt the warmth of the shower! I could even feel it on my old butt and thigh!! It still feels numb inside but this is a REAL change! I would do cartwheels if I could!! Jeanne in Dayton Jeanne, This made me cry with joy for you! Thank you for sharing this as it gives me hope! YAY Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/ -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.4/1355 - Release Date: 4/1/2008 5:37 PM
Re: [TMIC] Re: tmic-digest Digest V2008 #145
Myrna, Baclofen is one of the first ones that the neuro's try for spasticity. I've been on it for 4 1/2 yrs now in varying amounts. I also take a tablet of Zanaflex before bed which was just added about 6 months ago. Both have helped me. I know that others here take it as well. I hope you get rid of the UTI soon. Anytime we are sick with cold, flu, infections etc it always makes our pain much worse. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, April 01, 2008 4:18 PM Subject: [TMIC] Re: tmic-digest Digest V2008 #145 Whenever I have an infection, my whole body aches. I currently have a UTI and I am in such pain from my waist down. It's stiffness that bothers me 24/7. My neuro prescribed baclofen to help with the stiffness and spacticity? Has anyone had success with this? Myrna ** Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom000301) -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.3/1354 - Release Date: 4/1/2008 5:38 AM
Re: [TMIC] Fluid retention
Hi Frank, Thanks for the info. I looked up the Inversion Table. That is kind of neat. I know it would not be for me. I get light-headed just looking at the picture. Glad it works for you though. Heather in Calgary P.S. Did you check out this site Frank and if so have you heard of it? I've got a call in to my Physiatrist and am hoping to be able to try this out to see if it will help with my foot drop. http://www.walkaide.com/index.html - Original Message - From: [EMAIL PROTECTED] To: Heather Pieter [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Friday, March 28, 2008 9:45 AM Subject: Re: [TMIC] Fluid retention I'd be so light-headed after hanging upside down I'd have to lay down the rest of the day. Are you harnessed in or what? How the heck do you hang upside down?? I get in this Tilt machine, close an ankle lock around my ankles (foam lined steel; then I raise my arms to my chest and my body tilts back, then I raise my arms to my neck and I rotate upside down. When I waant get off, I just lower my hands to waist level. Try googling Tilt or inversion machine?? F -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.1/1348 - Release Date: 3/28/2008 10:58 AM
Re: [TMIC] Air Travel
I ditto that Sandy. - Original Message - From: Sandy Heidel To: [EMAIL PROTECTED] ; Tmic-list@eskimo.com Sent: Friday, March 28, 2008 9:34 AM Subject: Re: [TMIC] Air Travel Again...A YouTube video would help a lot. Sandy - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Friday, March 28, 2008 10:21 AM Subject: [TMIC] Air Travel I remeber the first sympoium I went to in Seattle. I had to fly out of Cleveland. It seems when I got the wheel chair to the door of the plane, a sweet youg thing, stewardessI guess, or flight attendant, whichever you prefer lloked at me straight in eyes. She said, I have a very simple solution to get you to your seat, are you ready? I said yes, and at that point she pulled out a stun gun, zapped me on my ass, and proceeded to watch me fly through the air, landing in my seat, to where she then duct taped me in place. It was a pleasant flight needless to say. Create a Home Theater Like the Pros. Watch the video on AOL Home. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.1/1348 - Release Date: 3/28/2008 10:58 AM
Re: [TMIC] Fluid retention
Frank, I'd be so light-headed after hanging upside down I'd have to lay down the rest of the day. Are you harnessed in or what? How the heck do you hang upside down?? Also, my TM was said to be Idiopathic. So the fact that there was some stress and a slight cold a while prior to TM I'm sticking with the doctors diagnosis of Idiopathic. I'm sure that the doctors researching in Baltimore are aware of these symptoms as well. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Thursday, March 27, 2008 7:28 AM Subject: Re: [TMIC] Fluid retention I also start the day out with thin ankles and end up with fat ones. My solution for the dependent edema- swelling caused by gravity and the lack of nerve control of the arteries and veins- is hanging upside down. I put in my ear-buds, turn on my ipod, and flip myself upside down for 30 minutes. Works great. F -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.0/1344 - Release Date: 3/26/2008 8:52 AM
Re: [TMIC] Traveling with TM
Each time I've flown to Ontario from Alberta since fall of 2003 when I got TM I tell the airline that I am handicapped and they seat me in the bulkhead (right at the front of the plane - first row) and then the washroom is right there. Also that is where we board the plane so not far to go. Heather in Calgary - Original Message - From: jrushton To: Regina Rummel ; tmic-list@eskimo.com Sent: Thursday, March 27, 2008 1:19 PM Subject: Re: [TMIC] Traveling with TM Hi, Regina! I don't know about the others but we've traveled quite a bit and that is one of the biggest problems. (Pardon us, men, but) I do wear extra pads, always go to the bathroom before boarding and am always able to use the closest bathroom even if it is in first class. They are so small and I'm not too big and they are even cramped for me but when you have to go, you have to go. I've had to try to hold it almost holding my breath until landing so it is a big important issue with traveling. I do my travel arrangements on-line and it would be a good idea to get into the habit of making sure we get a seat near the bathrooms. I just don't think about it then regret it later. You can usually do that. Hope some part of this helps! Jeanne ---Original Message--- From: Regina Rummel Date: 3/27/2008 4:09:58 PM To: tmic-list@eskimo.com Subject: [TMIC] Traveling with TM What's kept me from traveling since TM is having to go to the bathrom. How do you manage it? I don't think I would drink all day which is a bad idea, but then. R -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.1/1346 - Release Date: 3/27/2008 10:03 AM
Re: [TMIC] time has passed but....this is for Every1 on the TMA list
Hi Sal, My son got married one month to the day that I got TM. I'm very thankful that I got it 'after' the wedding and not before or on the day as it could have been terrible. There was a lot of stress and busy busy times as there were 370 guests. We had tons of family here from out of town. Then at the wedding rehearsal the ring bearer had a terrible cold, passed it on to my hubby. Then I got it but mine only lasted a couple of days. Once all our company left and I was back to work for about 10 days we had a long weekend and were just getting into relax mode. My TM hit me on the Saturday morning of the long weekend. Started with low back pain that I thought was just my same old pain that I had had for years from herniated disc in 1990, a car accident (head on t-bone) in 1991, another car accident where I was rear ended in 1994. So that is my little story. Heather - Original Message - From: sal r To: tm Sent: Tuesday, March 25, 2008 12:51 PM Subject: [TMIC] time has passed butthis is for Every1 on the TMA list I know for some of us it has been a lifetime of our TM, ADEM, NMO, MS and so on...but have we ever figured what happened? I know that we all have adapted to it and forgot about it but instead of having doctors and researchers find the reason why, whats a better source then the person who actually got it..What I am getting at is that i wanted everyone on the list to recall what they did 1 month to a year before their illness...ex: vacation, car accident...just something that you think would trigger it...I was in a car accident 8 months before my onset...also i was eating a lot of fast food and red meatjust even if you dont think it was it just put it down...it may not make a difference for us as it has already happened but what if we can prevent it for our future generations? -- Never miss a thing. Make Yahoo your homepage. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.0/1342 - Release Date: 3/25/2008 10:26 AM
Re: [TMIC] It's okay...
Jeanne, It is okay to have a 'Pity Party for One' at times. Sort of clears the air. I do that every once in a while myself and I'm sure that more of us do it as well. Heather in Calgary - Original Message - From: jrushton To: Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 10:14 AM Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange
Re: [TMIC] It's okay...
Rob, I have never counted the days since I got TM. I just go by years. For me it is now 4 1/2 yrs. I think if I counted the days I would probably curl up in a ball and not uncurl for a long time. Positive attitude is what we need but as I said to Jeanne it is okay to have a little 'Pity Party for One' every now and again. Now I'm going to figure out what 4000 days computes to. Have a good day Heather in Calgary - Original Message - From: Robert Pall To: jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 12:39 PM Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitudewe either continue living or chose to start dying! I choose life! Rob in New Jersey -- From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know
Re: [TMIC] (no subject)
Hi Linda, I don't seem to sweat below my lesion at T8 - T10. I think that was mentioned on the TM Forum at one point and Marieke said that with spinal chord injuries a person doesn't sweat below the lesion. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Thursday, March 20, 2008 6:37 AM Subject: Re: [TMIC] (no subject) Hi Jeanne, I also have the band 24 hours a day. Mine is T4-T5 area. That is where my lesion is in my spinal cord. I also get a lot of tingling on the left side of that area. The grease line I was talking was actually a very greasy to the touch line . As the numbness was ascending so was the grease line. It was around my waist and moved upward until it stopped around T4-T5. Another strange thing I experienced was a few weeks in, I had to rub off a lot of dead skin on both legs. Very Weird! It doesn't sound like any one else had these things. Anybody have a problem with not sweating in affected areas? Linda in Pa -- Create a Home Theater Like the Pros. Watch the video on AOL Home. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1336 - Release Date: 3/20/2008 9:48 AM
Re: [TMIC] Unidentified subject!
Things are quiet here for a little while. this happens sometimes. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: TM Sent: Monday, March 17, 2008 8:39 PM Subject: [TMIC] Unidentified subject! Wondering if everyone's computer got stolen!! Everytime I log on nobody has anything to say. Everybody ok? Must be out running sprints! I wish we all could -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1332 - Release Date: 3/17/2008 10:48 AM
Re: [TMIC] Unidentified subject!
Steve, Some people have switched to Lyrica from the Neurontin/Gabapentin. Some find it works better and some switch back to the Neurontin. I know there are other meds out there that some people use too so I'm sure they will chime in here to let you know. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: TM Sent: Sunday, March 09, 2008 6:58 PM Subject: [TMIC] Unidentified subject! Just seeing if anybody knows of a medication that works better than neurotine for the burning. (nerve pain) Thanks Steve Jabs from Pa. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1322 - Release Date: 3/9/2008 12:17 PM
Re: [TMIC] Another unidentified becomes identified!
Hello Rita, Glad to meet you even though none of us really like being here. :) You didn't mention if you are on any meds. Are you taking Neurontin/Gabapentin for the pain and to ease the burning hot/cold prickly sensations? Baclofen or Zanaflex or both are usually tried first for the muscle spasms? Do you take either of these? You asked about Another thing I experience that my neurologist thinks is something other than TM is if I am out in and it is windy or cold and tense up almost as if to shiver, my legs stiffen up and I have a hard time walking.. I have found as have many others here on the TMIC and on the TM Forum that the weather has a tremendous amount to our residual effects of the TM. Cold weather makes my legs stiffen up right away when I am out and trying to walk. I don't walk much in the cold except from the car to a store or restaurant etc. My legs just don't want to move then much at all. We get lots of cold weather here in Calgary too but right now it is like spring, sunny and warm. So going for a walk with my walker is okay right now. Hot weather is better and the muscles seem much better then. I find though that the hot weather can be draining at times too. Glad you have been lurking and have now introduced yourself. Write to us about anything at all as most have experienced all your residual effects, some more or less. There is lots of good information found from everyone here. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list tmic-list@eskimo.com Sent: Saturday, March 08, 2008 2:25 PM Subject: [TMIC] Another unidentified becomes identified! My name is Rita. I am in snowy Cleveland, OH. I was diagnosed with TM Memorial Day weekend 2007 at the C-4/C-5 region, apparently from a virus I had 3 weeks prior. With some people introducing themselves I thought it was time I did to. I have read your emails and received a lot of helpful information. So, hello to all of you, some I feel as if I know, and Thank You for the help you have given me over the past 10 months. My onset of TM seemed sudden. The Friday of Memorial Day weekend I was cutting a friends hair. I began having a sharp pain in my upper back. Thought it was just a kink and tried to work it out. I them began to have numbness in my left arm and them into my right. After dropping my comb a couple time and when I could barely open and close the scissors I told my friend something was wrong. Thank goodness I got the last snip in on her hair. She took me to the hospital and by the that time I was having a hard time opening my hands and was getting leg weakness. After 2 days in the hospital and several x-rays and cat scans a neurologist order a MRI. By Sunday he had diagnosed me with TM, checked my spinal fluids, which were fine and I was sent home on Monday Memorial Day. Not quite sure what the heck TM was and feeling week, I thought I would be better by weeks end and out shopping for flowers for the yard. Needless to say but my yard did not get any new plants last summer. On Tuesday the kids got picked up for school as I could not drive. My symptoms began to worsen. I began to feel that sharp pain in my neck and back. As I tried to reach in a cupboard for a cup my right arm fell and hit me in the face and the pain worsened. I started to panic when I tried to call my sister and my fingers couldn't push the buttons. after numerous tries I got a hold of her. She came and called the neurologist and he ordered steroids. I was very week. I remained out of work until mid August. My symptoms have improved greatly since and I am thankful for that. However, my body just doesn't feel right. I still do have numbness on the right side of abdomen, My right arm tricep still isn't doing good and I have a stim unit here to help it from deteriorating any further. I still get pain in my neck and back and in October I began experiencing Lhermittes sign, and I do get so tired still. I get a cold burning feeling in my arms and hands and they aren't cold to the touch. If something cold touches my fore arms it feels like it burns. Has anyone onset been from a virus? Another thing I experience that my neurologist thinks is something other than TM is if I am out in and it is windy or cold and tense up almost as if to shiver, my legs stiffen up and I have a hard time walking. Has anyone experienced that? There, I did it, I am now identified! Rita (Snowing BIG TIME in Cleveland) -- No virus found in this incoming message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM
Re: [TMIC] marinol use
Gaylon, Frank uses Marinol by prescription I think. I know he also uses Sativex. I hope he will chime in here and let you know. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, March 08, 2008 3:17 PM Subject: [TMIC] marinol use I've been researching Marinol andYes it appears that Marinol is the alternative to the weed smoking situation. I wonder if Marinol gives the same euphoria effect as the actual intake of weed smoke? Their is no way my Young Neurologist doctor would ever perscribe me Marinol cause he want even give any pain medication scripts. Cause of possible dependency and addictive problems with such medicines is what he told me. The medical association must be preaching the none perscribing of narcotics and other pain medicines very strongly to the New up and coming doctors. -- It's Tax Time! Get tips, forms and advice on AOL Money Finance. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release Date: 3/8/2008 10:14 AM
Re: [TMIC] New victim of TM
Hello Gaylon, This is Heather in Calgary and your message made it through. Write more to the TMIC list and if you have questions or concerns about your TM there are people from around the globe who are on this list. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, March 04, 2008 8:48 AM Subject: [TMIC] New victim of TM This is a first time response to the group so I want to find out if this gets through. I have had TM for only 6 months,and have been through an incredible swing of events to me. I will respond more if this message makes it into the group. Gaylon, in Georgia -- It's Tax Time! Get tips, forms and advice on AOL Money Finance. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.4/1310 - Release Date: 3/4/2008 8:35 AM
Re: [TMIC] question
Thanks for your answer regarding the Botox Rosalie. As I said to Alton in the other e-mail I am going to give it a try one time anyway. I was in physiotherapy at the hospital, at a physiotherist and at the University of Calgary in a special program for Rehabilitation from Sept 2003 until May of 2005 when I felt I was strong enough to carry on on my own. However I will try physio again once I get the Botox and also am also going to be getting another shot of Cortizone in the hip (bursitis from my awkward gait). The Physiatrist has said that physio may help me improve my gait at that time. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Sunday, March 02, 2008 1:18 PM Subject: Re: [TMIC] question I do aqua therapy for an hour and a half twice a week and also have a personal trainer at the fitness center and do that for one hour twice a week. Still cannot walk on my own or stand without a walker but my strength and mobility gets better all the time. Of course, i hate going and have to force myself to go but once I am there I feel so much better. Someone asked about Botox. I had a few shots in my calf which was supposed to help with my toes and foot drop. Did not work. I do wear a splint at night and that really helps alot. Take care, Rosalie -- Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.3/1307 - Release Date: 3/2/2008 3:59 PM
Re: [TMIC] Question regarding Botox
Thanks Alton, I'm going to give it a try at least the once anyway. I have right foot drop. Used to wear an AFO but stopped about a year and a half ago. I only get the spasms that wake me in the night or early morning or when I sit watching TV for any length of time. I have a lot of tone in that leg too, however the 'tone' is something I just never quite understand either when the doctor or the physio people talked about it. When I sit or lay down my weak right leg and foot turn in. However when I am standing my right leg and foot turn out. I just can never wrap my poor old head around why it pulls one way when I'm 'at rest' and the other way when I am standing. Heather In Calgary - Original Message - From: Alton Ryder To: Heather Pieter Cc: TM Internet Chat ; Jim Lubin Sent: Saturday, March 01, 2008 4:45 PM Subject: Re: [TMIC] Question regarding Botox I have had Botox in my calf, several shots, twice, neither with any effect - I'm immune to food poisoning, I guess. That was in 1999, I think. I then had a Baclofen pump installed for the excess and asymmetrical tone. The Baclofen significantly diminished my knee jerk spasms, but it did naught for the tone. I had to tackle the tone surgically by rerouting the primary tendons and wearing an AFO. Alton p.s. Jim, how do I search the archives? I've written this before one or two or three times. On Mar 1, 2008, at 5:4917 PM, Heather Pieter wrote: Hi Has anyone had Botox injections in the calf to ease the muscle spasms? I know that Marieke in Montreal has had them. My Physiatrist has suggested it to me. I am one of the 1/3 who can walk in the house without aids unless tired, use a cane or walker or shopping cart outside the home and occasionally use a wheelchair for longer distances. If you have had them what are the pro's and con's in your case? Thanks in advance, Heather in Calgary -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.3/1307 - Release Date: 3/2/2008 3:59 PM
[TMIC] Question regarding Botox
Hi Has anyone had Botox injections in the calf to ease the muscle spasms? I know that Marieke in Montreal has had them. My Physiatrist has suggested it to me. I am one of the 1/3 who can walk in the house without aids unless tired, use a cane or walker or shopping cart outside the home and occasionally use a wheelchair for longer distances. If you have had them what are the pro's and con's in your case? Thanks in advance, Heather in Calgary
[TMIC] Re: gel cushion
Barbara et al, I use this cushion called a Relax Gellcell. Originally I used it with my wheelchair when I left hospital in Oct 2003. I tried out about 10 other cushions before finding this one. It was new on the market at the time. The people who were supplying the wheelchair, cushions, walker etc tried out all the others then found this one. It was the best for me. I seldom use the wheelchair anymore unless going to museums, long walks (ride) with friends/family, or when I'm sick. (use walker or cane mostly now). However I use the cushion all the time. I can't sit in my motorized recliner (which is cushioned but my tailbone still hurts) or on any hard chair for any length of time without extreme nerve pain so use the cushion. There are air pockets 34 large air pockets that have gel on top of the air pockets. There is a pump that is used to inflate when it loses air which doesn't seem to happen very often at all. I can't remember the price of it as it was covered at the time by special medical coverage. I will try and dig up anything I can find on the price. The two websites are for the main page of the company that supplied it to the people I got it from and the second website shows a small picture of the cusion itself. http://www.trulife.ie/home.html http://www.trulife.ie/ourproducts.html?category_id=287 Hope this is helpful, Heather in Calgary
Re: [TMIC] the snow outside --- OT
Wow Alton. That sounds so beautiful. I know that a lot of people don't like winter but personally I love the 4 seasons. Even when the cold makes TM more difficult I couldn't imagine living somewhere else. Calgary has had a pretty good winter despite the minus 50 (with the windchill) a few weeks ago. It didn't last long though. I know that everyone in Canada have had a lot of snow and freezing rain this year. Thank you so much for your beautiful description of your view out your window. I too would buy a book that you write. Thanks, Heather in Calgary - Original Message - From: Alton Ryder [EMAIL PROTECTED] To: TMIC List tmic-list@eskimo.com Sent: Sunday, February 24, 2008 5:55 AM Subject: [TMIC] the snow outside --- OT The temperature is about 15°; the sun is seemingly as bright as in August. The snow on the lawn, about two feet deep, is undisturbed and lies in smooth undulations like Sahara dunes in miniature. Crystals of ice from twigs overhead are scattered sparsely and glint like stars. I am enchanted. Alton, who had to share this as best he could -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.0/1296 - Release Date: 2/24/2008 12:19 PM
Re: [TMIC] OT Religion
Well said Gilly. Heather - Original Message - From: Gilly Clark To: TM list Sent: Thursday, February 21, 2008 3:13 PM Subject: : [TMIC] OT Religion We must belong to the same belief system pHran3que, It would be wonderful if everyone could follow my most important rule. EVERYONE HAS THE RIGHT TO BE WRONG one should never however, be cruel or uncaring of other people. Another rule to remember, especially about rights. Your rights end where another's space begins. hugs, Gilly I can get down and dirty on this!! First: It is the belief of my church that the True God, The God above all gods is female- The Great Mother of all the lesser gods who gave birth to the god of christianity, Budha, Mohammed, etc. I could go on and on... OT Religion Use it- have fun pH -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.9/1292 - Release Date: 2/21/2008 4:09 PM
Re: [TMIC] prayer
Hi Cora, Your message came through. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, February 15, 2008 7:45 AM Subject: [TMIC] prayer Hey all: I hope this goes through. Have been able to receive, but not send anything for a couple of weeks, and yes, Jude is on my prayer list! Cora -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.5/1279 - Release Date: 2/14/2008 6:35 PM
Re: [TMIC] Re: *Mystery ER*
Hello Grace, That is wonderful news. What a great way to get the word about regarding Devic's. And you are a survivor of this horrible condition. Please let everyone know when this will be aired and on what network. I live in Calgary and hopefully will be able to see it here as well. Maybe once it has been shown on TV they will allow you to have it put onto the TM/Devic's website. Luv, Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Friday, February 15, 2008 8:27 AM Subject: [TMIC] Re: *Mystery ER* Hi all, I just found out that I have permission to tell my friends about this. On Wednesday, I filmed a segment for the Discovery Health Channel's *Mystery ER* It will follow my initial misdiagnosis and subesequent diagnosis with Devic's NMO. it was done at the University of Pittsburgh Medical Center's Kaufmann Building, where my neuro and infusion suite are located. It went well, and was not intimidating at all. The only really negative thing is that I had to do the filming without my teeth. I recently had to have them all removed as a result of steroid induced bone loss, and do not have dentures yet. (I saw myself on the monitors and I looked terrible!) Still, it is a small price to pay for the opportunity to get the word out about Devic's NMO. On Tuesday, they will be flying to Denver to interview my son for the segment. It will air in the summertime. I'm so happy that I have had this opportunity. Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.6/1280 - Release Date: 2/15/2008 9:00 AM
Re: [TMIC] am I online
Rick, Heather in Calgary here and yes you are coming through loud and clear here. - Original Message - From: [EMAIL PROTECTED] To: tmic-list tmic-list@eskimo.com Sent: Tuesday, January 08, 2008 8:37 AM Subject: [TMIC] am I online I hate to keep asking: Am I making it to the web site? I have been Having technical problems. I appreciate yopur help. Rick -- GOD BLESS US ALL -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1213 - Release Date: 1/7/2008 9:14 AM
Re: [TMIC] Angry here.
Rick, You are coming through loud and clear here in Calgary. Heatherin Calgary - Original Message - From: [EMAIL PROTECTED] To: Grace M. [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Friday, January 04, 2008 11:59 AM Subject: Re: [TMIC] Angry here. Am I Reaching the tmic web site, I am having computer difficulties. mPlease answer. Thanks Rick -- GOD BLESS US ALL -- Original message -- From: Grace M. [EMAIL PROTECTED] *Hi Guys,* ** *You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye?* ** *Grace * -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1209 - Release Date: 1/4/2008 12:05 PM
Re: [TMIC] Angry here.
Grace, Not sure who would write something obnoxious but I agree with you. In 10 years from now who will care? I have tried lately to make my writing in darker lettering as even I can't read it sometimes if it is too light in colour. Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Friday, January 04, 2008 10:08 AM Subject: [TMIC] Angry here. Hi Guys, You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye? Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1209 - Release Date: 1/4/2008 12:05 PM
Re: [TMIC] Jude
Hi Patti, Thanks for letting us know about Jude. Hope you do get to go and see her sometime in the future before you have more bad weather there. I understand there has been a lot of snow lately. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list-at-eskimo.com tmic-list@eskimo.com Sent: Thursday, January 03, 2008 10:55 AM Subject: [TMIC] Jude Hi Everyone, I just spoke with Jude and she asked me to tell you that she is thinking of and praying for you. She is still in the nursing home where they are treating a nasty bed sore. Jude said she has been working with hand weights and a therapist will be visiting her to help determine what can be done to excercise her legs. She said she is getting good care by a loving staff and believes she is in the best nursing home in our area, however, she wants to be back home. We are having a sunny day and I thought I would go visit her, but she didn't think today would be a good day. So, I'll try again! I told her about Cody and read Judy's last email. Jude will be praying for him as well as for the rest of us. Patti - Michigan -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1208 - Release Date: 1/3/2008 3:52 PM
Re: [TMIC] Cody
Judy, Thank you for keeping us informed about how Cody is doing. It is good that he is doing much better than a few days ago. Heather in Calgary - Original Message - From: Cody To: TMIC Sent: Wednesday, January 02, 2008 5:09 PM Subject: [TMIC] Cody Cody is doing better. No fever, blood pressure stable, still weak but getting stronger, he does have a high protein count in his urine. They are going to do a kidney biopsy Friday to try and figure out why it is so high. I'll let you know what they say. Judy -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1207 - Release Date: 1/2/2008 11:29 AM
Re: [TMIC] Please read?
I agree with all of the writing here. Without this list my life would be so much more difficult. We truly are family. In fact I think that we get along better than some 'real-life' families. ; ) Happy New Year everyone. I have made some very close friends through the TM Forum and the TMIC. Heather in Calgary - Original Message - From: L T CHERPESKI To: jrushton ; tmic-list@eskimo.com ; Jenna Sent: Sunday, December 30, 2007 9:27 PM Subject: Re: [TMIC] Please read? Jeanne, Jenna - I am so thankful for everyone here too. I can't even begin to imagine doing this on my own! Sharing information, being supportive of each other, and the great friendships! Happy New Year to All - our TM Family Linda - Original Message - From: Jenna To: jrushton ; tmic-list@eskimo.com Sent: Sunday, December 30, 2007 8:42 PM Subject: Re: [TMIC] Please read? I have to say I agree with you. TMIC and now the local group of TM's have had a great impact in my life. Happy New Year all! Jenna - Original Message From: jrushton [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, December 31, 2007 8:30:38 PM Subject: [TMIC] Please read? I just want everyone to know how happy I am to have you all in my life. It was a blessed day when I ran across the TMIC site. Thank you all Jeanne in Dayton, WA Looking for last minute shopping deals? Find them fast with Yahoo! Search. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.12/1203 - Release Date: 12/30/2007 11:27 AM 01_header2.gif
Re: [TMIC] Merry Christmas?
Barbara, I just checked out the site and 'Westgold' is right. It is just too too funny. I will try and remember (not likely with my memory though) on Dec. 25th, 2008. Heather in Calgary - Original Message - From: Westgold To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, December 27, 2007 3:17 PM Subject: Re: [TMIC] Merry Christmas? man, that site is a riot! Thanks so much for sharing!! I am going to pass it along to all my friends. - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, December 27, 2007 4:08 PM Subject: Re: [TMIC] Merry Christmas? Frank, you can keep up with Christmas by checking periodically with this site: http://isitchristmas.com/ :-) It did say Yes on Christmas Day. Barbara H. http://barbarah.wordpress.com/ In a message dated 12/27/2007 4:03:23 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, You are still around. Haven't seen you here for a long time. Yep, it was Christmas. Hope you did get some of those Humbug candies for Christmas. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, December 25, 2007 9:11 AM Subject: [TMIC] Merry Christmas? Is it really Christmas?? I had no idea... I kept hearing those kind of songs on the radio, but didn't pay much attention. That would explain all the lights, ribbons, and wreaths across the street. it would explain all those quasi-religious TV shows, too. My God, it is Dec 25th K, so what are you going to give me?? BaH, Humbug pH PS: In Montreal there are delicious hard candies called Humbugs See AOL's top rated recipes and easy ways to stay in shape for winter. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.11/1200 - Release Date: 12/27/2007 1:34 PM -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.11/1200 - Release Date: 12/27/2007 1:34 PM
Re: [TMIC] Merry Christmas?
Frank, You are still around. Haven't seen you here for a long time. Yep, it was Christmas. Hope you did get some of those Humbug candies for Christmas. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, December 25, 2007 9:11 AM Subject: [TMIC] Merry Christmas? Is it really Christmas?? I had no idea... I kept hearing those kind of songs on the radio, but didn't pay much attention. That would explain all the lights, ribbons, and wreaths across the street. it would explain all those quasi-religious TV shows, too. My God, it is Dec 25th K, so what are you going to give me?? BaH, Humbug pH PS: In Montreal there are delicious hard candies called Humbugs -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.9/1198 - Release Date: 12/26/2007 5:26 PM
Re: [TMIC] Prayers for Cody
He is in my prayers. Heather in Calgary - Original Message - From: Cody To: TMIC Sent: Thursday, December 27, 2007 10:14 PM Subject: [TMIC] Prayers for Cody Please keep Cody in your prayers. He is in the Hospital with acute renal failure and Infection that has gone into his blood stream. Then this afternoon we found out he also has MRSA and they have taken more blood to see if that has gone into his blood stream. His kidneys as of today were working at only 15% but his blood pressure has stablized. He is still very weak and can't sit on his own. Judy -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.11/1200 - Release Date: 12/27/2007 1:34 PM
Re: [TMIC] OT. Ice storm in Oklahoma
I live in Calgary and do NOT miss the ice storms I grew up with from age 7 to 21 in Ontario. They were very scary. Hope it all clears up for all of you in Oklahoma soon. Talked to my Mom in Ontario this evening and their weather is icy/snowy today too. Yuck. Heather in Calgary (it is cold here today but did warm up to plus 32 F) - Original Message - From: Jan Hargrove To: Alton Ryder ; tmic-list Sent: Tuesday, December 11, 2007 5:25 PM Subject: Re: [TMIC] OT. Ice storm in Oklahoma Yes, we're in OK..lots of ice, but we're one of the lucky ones, we have heat and lights!! Larry lives far enough south that he probably only got cold rainCora lives even further south, so she's probably ok Weatherman saying now, that likely more freezing tonite and in the a.m...then possible snow Friday nite and Saturday morning... I'll take snow over ice anytime!! janh Alton Ryder [EMAIL PROTECTED] wrote: I believe so. Alton, enjoying the weather here in NH On Dec 11, 2007, at 11:0656 AM, [EMAIL PROTECTED] wrote: So glad to hear you're ok. Doesn't Jan H. also live in OK? -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.1/1181 - Release Date: 12/11/2007 5:05 PM
Re: [TMIC] Heather--Looking for Lynne from Msg. Forums.
Hi Grace, I have sent Lynne an e-mail as well. Also on the TM Forum. I am wondering if she is away for you Thanksgiving festivities. Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Sunday, November 25, 2007 2:50 PM Subject: [TMIC] Heather--Looking for Lynne from Msg. Forums. Hi Heather, Have been trying to contact Lynne from the Msg. Forums. She has a Devic's patient in Michigan, who needs some help. In the event that you see a post from her, please mail her and let her know that I am looking for her. Have mailed her already, but have not heard anything back yet. Grace.Devic's Support -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.6/1150 - Release Date: 11/24/2007 5:58 PM
Re: [TMIC] thanks
Wow Sally, From Hawaii (I think that is where you are) to Utah. Weather change for sure. Don't be surprised if you feel different sensations in your limbs as well with the altitude and weather changes. Otherwise, glad you will be back with us in the new year. Looking forward to hearing from you then. Safe journey, Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, November 19, 2007 11:51 AM Subject: [TMIC] thanks I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all, Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.0/1137 - Release Date: 11/18/2007 5:15 PM
[TMIC] Grace? or anyone else??
Grace or anyone else, today on the TMA Forum there is a desparate plea by a young man whose wife is 33 and is suffering terribly from Devic's. He is pleading for anyone who has knowledge to help him with any pertinent information they might have. They live in the Netherlands and the doctors there are not that knowledgeable about it. I am just passing on this info hoping maybe someone here could help. I'm not sure if anyone or everyone who posts here reads the Forum. I have done so since I getting TM 4 yrs ago however maybe others have not. I have posted below where on the site this appears. Thanks, Heather in Calgary TMA Forum Forum Index - Devic's Disease/Neuromyelitis Optica (NMO) Posted: Wed Nov 14, 2007 9:35 amPost subject: My wife fighting for her life posted by Jaime
Re: [TMIC] Grace? or anyone else??
Grace, You are wonderful. Thank you sooo much. My heart went out to them but I know that there is no way I could help. You popped into my mind first thing as I know you have had your share of huge obstacles to overcome with Devic's. I know they will be so appreciative if I know human nature and especially the human nature in all of us who share TM, Devic's, ADEM etc. Thanks again so much, Heather - Original Message - From: Grace M. To: Heather Pieter Cc: tmic-list@eskimo.com Sent: Wednesday, November 14, 2007 12:57 PM Subject: Re: [TMIC] Grace? or anyone else?? Hi Heather, I've got it covered. Have already procured the Mayo contact number and sent it to him in order that his wife's neuro can arrange a consult with Dr. Wingerchuk. Have also sent him additional information and my private phone number. Thanks so much for keeping an eye out. Hugs, Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.31/1130 - Release Date: 11/14/2007 9:27 AM
Re: [TMIC] scissoring legs
Hopping? Yikes! For me that would hurt I think. Not about to try actually. Wonder what the hopping is to help with? I did do that grapevine exercise you are talking about though Grace. Heather in Calgary - Original Message - From: Grace M. To: Todd Tarno Cc: sal r ; tm Sent: Thursday, November 08, 2007 2:20 PM Subject: Re: [TMIC] scissoring legs I don't think there are any exercises to prevent scissoring. I used to do it while I slept, but since using a pillow between my knees, it's subsided. Hey Todd, i have to practice the walking sideways thing, too. There's two ways to do it and I practice both. One is too simply sidestep with one foot, and then step together with the other. The other way is to sidestep, and then cross either in the front or back, for the next step. I'm really good at it now. Do any of you practice hopping? I attempt a little hop, and it feels like I really am going to do it, but then nothing happens. Frustrating Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM
Re: [TMIC] scissoring legs
good point Sal. - Original Message - From: sal r To: Heather Pieter ; tm Sent: Thursday, November 08, 2007 3:22 PM Subject: Re: [TMIC] scissoring legs i think hopping could help with strenghtening the ankles also i think it ends a tremendous amount of signal to the brain so it could help with proprioception...lots of benefits... Heather Pieter [EMAIL PROTECTED] wrote: Hopping? Yikes! For me that would hurt I think. Not about to try actually. Wonder what the hopping is to help with? I did do that grapevine exercise you are talking about though Grace. Heather in Calgary - Original Message - From: Grace M. To: Todd Tarno Cc: sal r ; tm Sent: Thursday, November 08, 2007 2:20 PM Subject: Re: [TMIC] scissoring legs I don't think there are any exercises to prevent scissoring. I used to do it while I slept, but since using a pillow between my knees, it's subsided. Hey Todd, i have to practice the walking sideways thing, too. There's two ways to do it and I practice both. One is too simply sidestep with one foot, and then step together with the other. The other way is to sidestep, and then cross either in the front or back, for the next step. I'm really good at it now. Do any of you practice hopping? I attempt a little hop, and it feels like I really am going to do it, but then nothing happens. Frustrating Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM
Re: [TMIC] scissoring legs
okay, now I'm going to try it. I just now held onto the edge of the table with both hands. Hopped. Weak leg off ground about 1/4 inch, stronger left leg off about 1/2 inch. Now I can say, been there, done thatmoving on. Grace, I know you WILL hop too . come heck or high water. Heather in Calgary - Original Message - From: Grace M. To: Heather Pieter Cc: Todd Tarno ; sal r ; tm Sent: Thursday, November 08, 2007 3:14 PM Subject: Re: [TMIC] scissoring legs Heather, I'm not sure why the neuro asked me to try to hop. The visit before last, he held onto my forearms, and I to his, and he instructed me to take a *little* hop. It actually felt like I hopped---but really, nothing happened. I've been practicing here at home, but so far, have not actually done any real hopping. It is truly the oddest sensation. One's legs and feet, actually feel like they have hopped whenever they haven't. I get so frustrated!! One day, this old girl WILL hop, come heck or high water!! Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM
Re: [TMIC] scissoring legs
Thanks Louise that makes sense to me. Guess there is a reason for all this after all. Heather - Original Message - From: Louise Croyden To: Grace M. ; Heather Pieter Cc: Todd Tarno ; sal r ; tm Sent: Thursday, November 08, 2007 5:39 PM Subject: Re: [TMIC] scissoring legs Hi All, I don't write in very often but I noticed your message about trying to hop. The physiotherapist I am seeing had me try to hop and to skip. I couldn't do either. Have you tried skipping yet? It definitely is a strange feeling to get all psyched up to hop off the floor and the feet just stay planted there! I asked why and she said that both hopping and skipping require very quick messages between the nerves, brain and muscles and, when we have a spinal cord injury, the responses aren't fast enough. They aren't her exact words, and it was a few months ago, but that is the gist of it. I asked if practising would help but, if I remember correctly, she didn't seem to think it would. I think she was using it more as a diagnostic tool than an exercise for me to do. Regards. Louise - Original Message - From: Grace M. To: Heather Pieter Cc: Todd Tarno ; sal r ; tm Sent: Thursday, November 08, 2007 5:14 PM Subject: Re: [TMIC] scissoring legs Heather, I'm not sure why the neuro asked me to try to hop. The visit before last, he held onto my forearms, and I to his, and he instructed me to take a *little* hop. It actually felt like I hopped---but really, nothing happened. I've been practicing here at home, but so far, have not actually done any real hopping. It is truly the oddest sensation. One's legs and feet, actually feel like they have hopped when ever they haven't. I get so frustrated!! One day, this old girl WILL hop, come heck or high water!! Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM
Re: [TMIC] wheelchair accessory
Alton, You sound very inventive. Feels good to do something like that and see how nice the yard looks afterward. I love the maple trees and can't imagine though having 3 of them in your front yard. The beauty of the colours are wonderful though aren't they. I'm hoping to try your Biscotti recipe one of these days. Heather in Calgary - Original Message - From: Alton Ryder To: tm Myellitis Sent: Tuesday, November 06, 2007 3:50 PM Subject: [TMIC] wheelchair accessory We have three large maple trees in our yard. Shade in summer and stunning beauty in October. And a ton of leaves in November. I strapped the power head of the shop vacuum to the arm of the wheelchair, plugged in the long, outdoor extension cord, and roared off to blow leaves, wig-wagging to clear a strip about six feet wide. It violated the tranquility of our home, but I felt that for once I was doing something useful. Alton -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.23/1113 - Release Date: 11/6/2007 10:04 AM
[TMIC] Meeting Someone else with TM
Hello there, I see that it is fairly quiet today so thought I could send this out. Early last month I tried to Unsubscribe from the TMIC and received several nice notes asking why I was leaving. I was only going on a little vacation to visit family in Ontario. I'm back now and have been for a couple of weeks. My hubby and I have lots of family in that province so it takes quite a while to visit everyone. However, this time I also had another very special reason to be excited about our trip. I was going to meet PattiV from Michigan. Patti got TM in Nov 2003 and I got it in Sept 2003. We discovered each other on the TM website Forum and noticed that many of our symptoms were similar so we sent private messages to each other and eventually sent e-mails to our personal home e-mails. This was followed by exchanging photos, telephone calls and lots of things about each other that had nothing at all to do with TM. In other words we became good friends. We are just 5 years apart in age. We decided that THIS time that my hubby and I were in Ontario (we go once a year at least) it was about time that Patti and I got to meet. We set up a meeting place in a hotel about half way between where she lived in Michigan and where we were visiting in Southern Ontario. And it was a great thing to do. My hubby and I arrived first at the hotel and drove around looking for Michigan licence plates. They had not yet arrived. So as we were signing in I kept looking out the door for Patti and her hubby to arrive. My hubby saw them first. When I looked out there was Patti turning and taking her first few steps with her cane. I said to my hubby in a very excited voice She walks just like me!!. That was so great to see someone who walks like me and it gave me a little heart tug to realize in just that moment that we were even more alike than I had imagined. Patti and I had wondered if our hubby's would have much to talk about and we just decided that if they didn't then they would just have to listen to us talk. AND talk we did. For hours that evening and hours the next day. Our hubby's seemed to find lots to chat about too. Patti is a lovely person, warm and friendly and she gives great hugs. We chatted like long lost sisters actually. Even though we talk on the phone seeing and being with someone else who has TM is so much different. Somehow you get a better idea or something like that when you actually see that person in 'real life'. Now I know what everyone means who has gone to a TM symposium or small group meetings and you meet another person with TM. There is a special bond. No matter which 1/3 of recovery a person is in there is just something special knowing that that other person has gone through or is going through the same things you have done. Patti and I laughed and giggled and talked and talked and talked some more. We discussed things that I know we have talked about on the phone but somehow it was different when you could show that person how your legs or feet react to what you are experiencing. We were attacked a little differently me at T8 to T10 and she C4 to C6. She has problems with her hands/arms and legs. My problems are mainly legs from waist to toes. However, talking about the banding, balance, the prickly hot and cold are all the same for each of us. After seeing pictures of us together my Mom's first comment was 'you even smile alike'. Now that is something isn't it? I know this is long but I just want to emphasize 'if you have a chance to meet someone else with TM - then do just that' Thanks for listening, Heather in Calgary
Fw: [TMIC] wobble boards
- Original Message - From: Heather Pieter To: sal r Sent: Monday, October 29, 2007 2:42 PM Subject: Re: [TMIC] wobble boards Hi Sal, I did use a wobble board but it was not for quite a while after I was taking PT. One of the first things I had to do was to use a full length mirror, put a bed pillow on the floor in front of the mirror (the mirror is to see our posture), pull wheelchair up to pillow, use support (in my case a tall dresser by the mirror and the end of the sleigh bed) to help balance yourself. Amazingly this is not easy at first. When I was trying to build some strength in my legs I was in PT and one of the things I did was ride on one a recumbant bike. I eventually graduated to a stationary bike but had to have helpers get me up there in the beginning. I could not ride for very long at first then worked up to about 15 to 20 minutes. This riding on the stationary bike took me about 18 months to reach that point. I also had to sit on the edge of a flat hard bed like piece of equipment (at PT - which was at a program run at our local Calgary University) and practice standing up then sitting down, first using my wheelchair or walker for support. I eventually gained enough strength in my legs to stand and sit without any support. I HAD TO remember to always have my knees over my toes when doing this exercise. This was hard to remember until I forced myself to watch my feet and knees all the time. Currently (4 years now with TM) I still have to look at my knees and toes from time to time to make sure that is what I'm doing. My right leg is my 'weak' leg. I was told by both the PT in the hospital (where I was for 2 months with another 5 months as an outpatient), and with a private PT for another 3 months then also the 18 months with the special program at the University NOT to refer to my 'weak' leg as my 'BAD' leg. You know it works. If we think of our 'weak' leg as a 'BAD' leg or both legs as 'BAD' there is some sort of psycological thing that goes on. Not sure what it is but once I started to think of my limbs as 'weak' and not 'BAD' it seemed easier. Silly isn't it??? I am going to attach here somethig I wrote about a month ago to the group as I'm not sure if you saw it or not. Sort of show the exercise regime I had for over a year and a half when I first had TM. I also am going to see my 'physiatrist' in a couple of months and need to discuss with him some problems I am currently having with the weakness in my leg and my hip and knee and ankle. My right leg will just 'sde' away from me if I'm wearing slippery soles on my slippers or just wearing socks. I will go to stand and 'ooops' there is my right leg all slid out to the right and I have to physically pull it back to the knee over toe position before I stand. Sometimes I have forgotten to look and 'ouch' it 'huuurrrts' to try and stand that way, besides being impossible. My right foot will automatically turn out while I'm standing and I don't always notice it. My right foot will also 'STAY PLANTED' to the floor sometimes when I go to turn and take a step, and this has almost 'PLANTED ME' on the floor or another person or furniture because I am never 'notified' by my brain that it is going to happen until I realize it is 'STUCK' like glue there on that piece of hardwood, tile or carpet and I'm turned or turning or trying to take a step. What I wrote a while ago. Hello Mindy, Physiotherapy DOES help..A LOT!!! I know that for a fact. I was totally paralyzed in the beginning. Could only move my big toe on one foot, just a little when first in hospital. They took me for physiotherapy in the hospital within the first few days there. Took me in a wheelchair, showed me how to transfer, taught me how to sit up. I did a lot of little things even while lying in bed. I was then put into Rehab section of hospital for the remaining 5 weeks in hospital (8 weeks or 2 months in total). During that time I was given exercises to do while in my room and taken for therapy every day wheeled down in the wheelchair. The physiotherapy gals taught me the basics of walking again which was extremely difficult. I did learn though and was kept as an outpatient for physio and returned to the hospital 3 times a week for continued therapy until month 7. At that time I had to go to physiotherapy outside the hospital which fortunately was also paid for by my health coverage through my work. I continued with that for another 5 months. During this time I relearned how to walk without canes etc. I was very very shaky and my balance was really bad. However, I went 3 times a week to this therapy. After the 5 months there that program was discontinued by the government health services. (things keep changing here all the time). By this time though I had been in some sort of physiotherapy for a year. During the time I was taking
Re: [TMIC] wobble boards
Phran3que, I don't know if I would be able to use one now either. I was getting not too bad after my last physio sessions in mid 2005 but still had to have something to hold onto, in my case it was the rail at the edge of the running track in the University gym where our special classes were held. Heather - Original Message - From: [EMAIL PROTECTED] To: sal r [EMAIL PROTECTED]; tm tmic-list@eskimo.com Sent: Monday, October 29, 2007 3:04 PM Subject: Re: [TMIC] wobble boards has anybody tried a wobble board I used to be able to use a wobble, but can't any more. I wish there was a cure for the balance, loss of proprioception. Take care F -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.12/1098 - Release Date: 10/29/2007 9:28 AM
Re: [TMIC] my pofile
WoW!!! Sal, You have been through a LOT. You are an amazing young man. You have a good attitude to life despite all you have been through. Keep us posted on how you are doing. Heather in Calgary - Original Message - From: sal r To: tm Sent: Saturday, October 20, 2007 4:26 PM Subject: [TMIC] my pofile for you that know me and have always wondered what i look like here is my myspace link...this pic was before i gor Dx with Tm... also check out my blogs i think they would be of help to people who just need some inspiration or just guidance. www.myspace.com/srasuli916 __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.3/1082 - Release Date: 10/20/2007 2:59 PM
Re: [TMIC] officially TM
Hello Mindy, Physiotherapy DOES help..A LOT!!! I know that for a fact. I was totally paralyzed in the beginning. Could only move my big toe on one foot, just a little when first in hospital. They took me for physiotherapy in the hospital within the first few days there. Took me in a wheelchair, showed me how to transfer, taught me how to sit up. I did a lot of little things even while lying in bed. I was then put into Rehab section of hospital for the remaining 5 weeks in hospital (8 weeks or 2 months in total). During that time I was given exercises to do while in my room and taken for therapy every day wheeled down in the wheelchair. The physiotherapy gals taught me the basics of walking again which was extremely difficult. I did learn though and was kept as an outpatient for physio and returned to the hospital 3 times a week for continued therapy until month 7. At that time I had to go to physiotherapy outside the hospital which fortunately was also paid for by my health coverage through my work. I continued with that for another 5 months. During this time I relearned how to walk without canes etc. I was very very shaky and my balance was really bad. However, I went 3 times a week to this therapy. After the 5 months there that program was discontinued by the government health services. (things keep changing here all the time). By this time though I had been in some sort of physiotherapy for a year. During the time I was taking these physiotherapy classes I was also enrolled in a unique class held at the University of Calgary. This was introduced to me and my husband by the Occupational Therapist at the hospital I was in. This class is one I had to pay for. It ran for 3 months at a time, twice a week. I travelled there at first with my husband who would drive me there and either sit and wait for me or sit and read in the University hallways, or woud go for a walk. Eventually I got onto the Handicap buses and would go twice a week with that service. I started out doing all this in my wheelchair, then with my walker and eventually was practicing walking there with my cane. This particular program holds about 25 people at a time. It is overseen by a Kinesiologist at the University. That person has dedicated staff of 3 or so people and then kinesiology students each term volunteer to help with each client as well. The volunteer times are recorded each day and go toward some sort of credits for those students. Each client taking the course is assigned a student volunteer every day. These kids are great. They are interesting and interested young people who willingly help with keeping you on track with your exercises and being friendly and helpful at the same time. People in this program have had strokes, spinal cord injuries through falls, disease etc. Some people there had head injuries, MS etc. Each person's program is set up just for them after consulting with the Occupational therapist from the hospital, or from information from your doctor etc. It is a great program and you work as hard as you can at your own pace. I went to this program from Feb 2004 until May of 2005. I was in physiotherapy through the hospital and outside the hospital from Sept 2003 until Aug 2004. All in all a year and 8 months of a LOT of physiotherapy and exercises. Now you must know that prior to TM my idea of exercising was a 'good swift sit'. I hated exercise and still do. However, without all this physio and exercise I would have had atrophied muscles and usless limbs. I'm so grateful for all the teaching and help I had through the various therapies. Yes, it hurt, it was hard and painful etc etc. I was tired and ached and hurt more than if I hadn't done it. But it got my strength in my legs back. Today I walk without a cane in the house unless I am tired. I walk outside usually with a cane if going a short distance, with a walker for some longer distances or shopping if there is no cart available. I use the wheelchair only on rare occassions now if there is a long distance, a large shopping mall etc. I was affected at T8-T10. Idiopathic TM is how I was diagnosed. Bowel, bladder issues. I am still on lots of meds, 2400 mg Neurontin, 10 mg of Baclofen, 3 mg of Zanaflex each day. I still suffer pain, pins and needles, spasms 24/7. But without the exercise and therapy I would a lot worse off than I am now. Mindy, I know that I am very fortunate to be one of the walking wounded. I know that there are others with TM who are better off or worse off than I am. However, without therapy I would not be where I am. Hope this helps you. Show this letter to your doctors if you would like to. If it will help them to know therapy does help. It doesn't get rid of the pain but it helps. Sincerely, Heather Fraser in Calgary - Original Message - From: Lawrence King To: tmic-list@eskimo.com
[TMIC] unsubscribe
unsubscribe
Re: [TMIC] SSDI
Congratulations Sally. That is wonderful news. I'm very happy for you. Heather in Calgary where it is truly fall and a beautiful colours everywhere. Too bad it is the precursor to winter. LOL - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; TMIC-list@eskimo.com Sent: Sunday, September 30, 2007 8:13 PM Subject: [TMIC] SSDI Hi Everyone, I haven't been able to participate too much lately, because I still have trouble sitting at the computer for more than a few minutes (due to pain), but I have to share my news with you: I just got a letter from SSA saying that the judge has made a 'Fully Favorable' decision in my SSDI case! There's still some red tape before I actually see any money, but after 2 1/2 years with no income, what's a few more months! At least I'm making progress here, after 2 SSDI denials (one telling me that my TM wouldn't last as long as 12 months, even though at the time I'd already had it for 2 years!) If anyone's looking for a good SSDI attorney, I've been really happy with mine. And if he didn't before, he now knows a bit about TM! :) He's the brother of a friend of mine and is licensed to practice in all 50 states (I live in Hawaii; he lives in Texas). If you're interested, his name is Jonathon Healy; you can email him at [EMAIL PROTECTED] Thanks everyone, for all your input that has helped me in 'surviving' this challenge, as well as for information that helped to make my case, etc. Love, Sally -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.36/1041 - Release Date: 10/1/2007 10:20 AM
Re: [TMIC] Oprah
That was Allen Rucker who has it and was on the Montel Williams (is that his last name?) show. He (Allen) had written the book. Heather in Calgary - Original Message - From: Westgold To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, September 22, 2007 9:04 PM Subject: Re: [TMIC] Oprah Hi everybody --- Is Cody the most famous person with TM? That guy who was on Montel is also well-known, we should also be telling Oprah about him. (She really likes people who have written books.) A famous person with any disease always helps raise the profile and raise more research dollars. I have sarcoidosis, and hardly anybody heard about it until 60 Minutes did a spot on model former MTV VJ Karen Duffy and her struggle with it, and the book she wrote. Then Bernie Mac came out said he had it too. A spot on 60 Minutes would be great for TM too! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.30/1025 - Release Date: 9/23/2007 1:53 PM
Re: [TMIC] Oprah
not to give sympathy but to better understand that we may not always be able to be at our best but rather are just trying to make it through the day. Gary, I like the way you put this. I think that now sometimes we are at our best and we have to get used to that being our 'new normal'. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: TMIC List Sent: Saturday, September 22, 2007 8:52 PM Subject: [TMIC] Oprah I wrote to Oprah about Cody Unser being on her show. I guess the benefit of exposing people to TM is 1) perhaps it would result in more funding being made available for research 2) more doctors will be familiar with TM and recognize symptoms more quickly and 3) others might be aware not to take for granted their health and be more understanding of those with disorders. One example of this 3rd point is when I came back to work after being off with my initial TM experience. I found out that a co-worker, a big Indy 500 fan, knew about Cody Unser and thus was a little aware of TM when others at work had not a clue. So, it is nice when others are introduced to TM, not to give sympathy but to better understand that we may not always be able to be at our best but rather are just trying to make it through the day. Gary in Michigan -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.30/1025 - Release Date: 9/23/2007 1:53 PM
Re: [TMIC] Oprah
Rosalie, I know that GB was one of the things (along with others) I was tested for before they finally gave the diagnosis of TM. I think that GB is a little better known. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, September 23, 2007 6:53 AM Subject: [TMIC] Oprah I too, wrote and received emails from Cody and her mother and from Allen Rucker. Will someone please send me the email address for Oprah I will write to her also. By the way, this past week, on one of the news programs (in the New York area) there was a quick report on an unusual illness. A young boy, I think he was around 10, camd down with Guilliane Barre Syndrome which has alot of the symptons of TM. It showed how he overcame this disease and is back to almost normal. I wonder how they picked up on this and not anyone with TM. On reflection I should have written to the station but now I cant remember which news program it was on. Take care, Rosalie -- See what's new at AOL.com and Make AOL Your Homepage. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.30/1025 - Release Date: 9/23/2007 1:53 PM
Re: [TMIC] Oprah
I am pretty sure that Allen Rucker reads these e-mails. So maybe he will come in here and let us know what he thinks. Heather in Calgary - Original Message - From: Larry Throne To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, September 22, 2007 9:15 PM Subject: Re: [TMIC] Oprah I may be dating my self but I believe the county western singer Donna Fargo had TM in the late 70's but think she has gotten quite a bit of return. The guy on Montel was Allen Rucker. Nice guy and I enjoyed his book. He might be someone to contact about contacting Opra, 60 minutes, ect. Larry in Oklahoma From: Westgold [EMAIL PROTECTED] To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] Oprah Date: Sat, 22 Sep 2007 23:04:53 -0400 Hi everybody --- Is Cody the most famous person with TM? That guy who was on Montel is also well-known, we should also be telling Oprah about him. (She really likes people who have written books.) A famous person with any disease always helps raise the profile and raise more research dollars. I have sarcoidosis, and hardly anybody heard about it until 60 Minutes did a spot on model former MTV VJ Karen Duffy and her struggle with it, and the book she wrote. Then Bernie Mac came out said he had it too. A spot on 60 Minutes would be great for TM too! -- Discover sweet stuff waiting for you at the Messenger Cafe. Claim your treat today! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.30/1025 - Release Date: 9/23/2007 1:53 PM
Re: [TMIC] OT - looking for
Haven't seen anything on line from him nor have we heard from Errol White in Austrailia for a long time either. Wonder how his little grandchild is doing. Heather in Calgary - Original Message - From: Bernard Pelow To: TMIC Sent: Friday, September 14, 2007 7:42 AM Subject: [TMIC] OT - looking for 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 -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.19/1008 - Release Date: 9/14/2007 8:59 AM
Re: [TMIC] Question
Hi Ann, I re-subscribed yesterday thinking that maybe I had been dropped from the list like a couple of years ago. Guess things are just quiet. Maybe that is a good thing. Or Maybe gone to find Frank as you say!!! :) Heather in Calgary it sure feels like 'fall' here - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, September 10, 2007 3:53 PM Subject: [TMIC] Question Has everybody gone to find Frank? Ann in Virginia -- See what's new at AOL.com and Make AOL Your Homepage. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.13/998 - Release Date: 9/10/2007 8:48 AM
Re: [TMIC] Re: OT: What should I do, OT?
Okay now, that is my chuckle for the day. Tee Hee. Few words, dry wit, too funny. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: frank @ franksheldon. com [EMAIL PROTECTED]; Grace M. [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Thursday, September 06, 2007 1:49 PM Subject: Re: [TMIC] Re: OT: What should I do, OT? Don't turn around! Patti Grace M. [EMAIL PROTECTED] wrote: = *Frank,* ** *You've made my day, and sound exactly like my type of guy. As an aside, I am 5 foot 8, very slim, salt and pepper hair, still worn long, and still look outstanding in a pair of good jeans. ;-) Often when seen from behind I still get those welcomed whistles, but for some reason, whenever I turn around..the poor young fellas scream and make the sign of the cross with their fingers. Go figure?* ** *Grace* -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.8/993 - Release Date: 9/6/2007 3:18 PM
Re: RE: [TMIC] OT hello?
I was thinking more Robert Redford/George Clooney etc etc. James Garner is good too. Phranque could look like Ph3ranque too. Heather in Calgary - Original Message - From: Bob and Sue Mattis To: 'Grace M.' ; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Wednesday, September 05, 2007 8:12 AM Subject: RE: RE: [TMIC] OT hello? I've always fantasized that Phranque looked like James Garner. Guess that gives away my age. Sue -Original Message- From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Tuesday, September 04, 2007 7:12 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: RE: [TMIC] OT hello? Ladies, Don't you think that it's more fun for all of us to just fantasize about Frank's striking good looks? Think of itwhat's George Clooney for you, might be an aging Clint Eastwood for me, and a steamy Brad Pitt for someone else. Why burst our bubble? ;-) Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.6/991 - Release Date: 9/5/2007 2:55 PM
Re: RE: [TMIC] OT hello?
Trudy, Nice picture you sent. I agree. Frank is under a great deal of pressure. Enjoy your holiday. Aaaa, sun, sand and VINO Heather - Original Message - From: Trudy To: 'L T CHERPESKI' ; [EMAIL PROTECTED] ; 'Grace M.' Cc: tmic-list@eskimo.com Sent: Wednesday, September 05, 2007 2:30 PM Subject: RE: RE: [TMIC] OT hello? Sorry about this Frank. you've been put under a great deal of pressure. maybe you should leave us older women to our fantasies..J Trudy Leaving tomorrow for a vacation on Cape Cod.. I cannot wait.Just sun, sand and vino. -- From: L T CHERPESKI [mailto:[EMAIL PROTECTED] Sent: Wednesday, September 05, 2007 12:55 AM To: [EMAIL PROTECTED]; Grace M. Cc: tmic-list@eskimo.com Subject: Re: RE: [TMIC] OT hello? By golly Grace, I think you're onto something here. Uh FRANK, how does it feel having so many of us ladies fantasizing about you. (blushing, of course Linda (this time not telling what city or state I live in or what the weather is like today!) - Original Message - From: Grace M. To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, September 04, 2007 5:11 PM Subject: Re: RE: [TMIC] OT hello? Ladies, Don't you think that it's more fun for all of us to just fantasize about Frank's striking good looks? Think of itwhat's George Clooney for you, might be an aging Clint Eastwood for me, and a steamy Brad Pitt for someone else. Why burst our bubble? ;-) Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.6/991 - Release Date: 9/5/2007 2:55 PM image001.gif
Re: RE: [TMIC] OT hello?
Hmm, now we will all want 'voice - e - mail'. LOL :) Heather - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; Grace M. [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Wednesday, September 05, 2007 4:21 PM Subject: Re: RE: [TMIC] OT hello? What if his looks doesn't fit his voice? That's something to think about too! Patti Grace M. [EMAIL PROTECTED] wrote: = Ladies, Don't you think that it's more fun for all of us to just fantasize about Frank's striking good looks? Think of itwhat's George Clooney for you, might be an aging Clint Eastwood for me, and a steamy Brad Pitt for someone else. Why burst our bubble? ;-) Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.6/991 - Release Date: 9/5/2007 2:55 PM
Re: RE: [TMIC] OT hello?
Okay. NOW we all need to see a picture of you Frank. :) Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: Trudy [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tuesday, September 04, 2007 8:16 AM Subject: Re: RE: [TMIC] hello? Did you not take an oath and did you not swear by ii. by Apollo the Physician and by Asclepius and by Health and Panacea and by all the gods as well as goddesses, I am very glad that you are here. not just for your medical advice but for your unique humor.. and of course your good looks!! AH SHUCKS ! ! ! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.5/988 - Release Date: 9/4/2007 9:14 AM
Re: [TMIC] Pam is hospitalised.
Thanks for the information Grace. How is your daughter and her friend doing? Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Monday, September 03, 2007 6:16 PM Subject: [TMIC] Pam is hospitalised. I just spoke with her, and she asked me to let the list know, that she has experienced an exacerbation that has affected both legs. She is in good spirits, and will be having a meeting with her physicians tomorrow. Please keep her in your thoughts and prayers. Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.3/986 - Release Date: 9/3/2007 9:31 AM
Re: [TMIC] hello?
Tim, You should be here in Calgary. There was frost two nights ago. Not a killing frost but a frost all the same. We covered the tomatoes just in case. We have quite short summers here in Calgary. However, Indian summer is just around the corner and that is good. Usually after the kids get back to school after the Labour Day weekend we have nice warm days for a while again. So if you want to type come here. However the cooler weather plays havoc with the aches and pains associated with TM (and I'm sure with arthritis and other illnesses). Heather in Calgary - Original Message - From: Tim Holder (Work) To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, August 28, 2007 3:00 PM Subject: RE: [TMIC] hello? I know exactly what the problem is. It's the heat. I just don't feel like typing. But, I'm reading every single message and praying over all of you gang. So, when it's cooler.my fingers will be on FIRE on the keyboard. J Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, August 28, 2007 9:07 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] hello? I am out here. I guess for the moment we are all just enduring the symptoms of TM and busy with getting on with life . But since I'm writing, let me just ask. Is anyone else using valium to help with spasms? This is what my primary physician prescribed at the onset of TM. Since then, my neurologist had me on Dantrium which didn't seem to prevent spasms, then the same with Baclofen but 5mg Valium (Diazepam) taken would eventually stops the spasms so Ican go to sleep or at least sit comfortably. Now it seems as if I need to take one more often than I have been. My prescription calls for one tablet twice a day--should I try to get my doctor to prescribe them more often, or see my neurologist to and try Baclofen again or is there something else? Your thoughts. Gary in Michigan - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, August 28, 2007 9:27 AM Subject: [TMIC] hello? Anyone out there? Havent seen any email in a few days. Get a sneak peek of the all-new AOL.com. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.10/977 - Release Date: 8/28/2007 4:29 PM
Re: [TMIC] OT/Daughter going to be all right.
Grace, I'm so thankful that your daughter and her friend were not more seriously hurt. I hope they both have no long term affects. Remember to take care of yourself as well. Easy to say, hard to do when you are no doubt worried about them both. Hugs, Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Thursday, August 23, 2007 7:50 AM Subject: [TMIC] OT/Daughter going to be all right. They ended up having to life flight her, but all is well. Some heavy cuts, lots of abrasions. I had a really hard time getting to the accident scene---they told me *No*. I told them *YES!*, and my neighbor gunned the engine and off we went. The car brought me to my knees. She's an inexperienced driver, as it is. Evidently, she was traveling at a high rate of speed (60-65mph) on our country road, and attempted to pass a handicapped community service bus,(My bus.) hitting it in the process. A Fed Ex truck was coming so she veered off the road and climbed a bank, taking out 3 or 4 small trees before rolling several times. My God, the car was on it's roof, the front bumper had somehow gotten tangled in the back axles, exposed and displaced motor and gas and fluids everywhere. No one knows how those children lived. Only a half hour later the car burst into flames and burned. Thank God for seat belts and air bags. I'm over at my Exes house today as I stayed here all night. Her passenger is still hospitalised and was on a morphine drip last night as he couldn't stand the pain of his ribs.She refused to allow them to admit her, so she is here with me. She did a lot of moaning last night, and so I kept checking on her through the night. They assured her Dad that there are no internal injuries, but it's scary nonetheless. There is a compassionate and loving God who was looking after them. Grae -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.2/966 - Release Date: 8/22/2007 9:05 AM
Re: [TMIC] OT/Daughter hurt in serious accident.
Oh Grace, I'm so sorry to hear this news. Keep us informed if you can and takecare of yourself too. I'll be praying for both of them. Heather in Calgary - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Wednesday, August 22, 2007 2:08 PM Subject: [TMIC] OT/Daughter hurt in serious accident. My sixteen year old daughter has been in a serious accident. She has only had her license for less than a month, and her new car for less than two weeks. She's been taken to a hospital in WVA. Her passenger has been life flighted. Ex was called out of work and is on his way to the hospital and I will be going down shortly. Say a prayer for them both that there are no serious injuries. Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.2/966 - Release Date: 8/22/2007 9:05 AM
Re: [TMIC] SUBSCRIBE (see below)
I remember this happened to a lot of us off and on for about a year a couple of years ago. It was a mystery then and appears to be one now too. As Barbara says just 'resubscribe'. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, August 21, 2007 3:21 PM Subject: Re: [TMIC] SUBSCRIBE (see below) That happens to me occasionally -- I don't know why. I just resubscribe. One of the mysteries of cuber-space, I guess. Barbara H. http://barbarah.wordpress.com/ In a message dated 8/21/2007 4:58:30 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: I get mail from the list all of the time but when I posted to the list, I got an email saying I couldn't post to the list cuz I wasn't a member. Huh? I've been here for years Hildred -- Get a sneak peek of the all-new AOL.com. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.1/965 - Release Date: 8/21/2007 4:02 PM
Re: [TMIC] e-mail check
You came through loud and clear here Ann. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, August 20, 2007 4:09 PM Subject: [TMIC] e-mail check -- Get a sneak peek of the all-new AOL.com. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.1/962 - Release Date: 8/20/2007 1:08 PM
Re: [TMIC] Surgery on Monday
Hello Natalie, Heather in Calgary here. I'm so sorry to hear that you face another surgery. Here's hoping for you a quick recovery and much needed relief from the incontinence problems after this surgery. You have certainly had your share I'd say. Please don't let your daughter get to you. That sounds kind of mean for her to be so hard hearted. As Grace says, we don't want to see you on CNN. Try and keep positive thoughts and know that we are all here pulling for you. You just may fool all of them and recover faster than 4 to 6 months. Know that our thoughts and prayers are with you. See you back here on line sometime in the near future. Luv 'n Hugs from Heather in Calgary - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Saturday, August 18, 2007 3:02 PM Subject: [TMIC] Surgery on Monday Hello to all: I went yesterday to the hospital to get a picc line put in me again as I have no veins left in my arms and hands at all. I wish they would use my legs, but they seem to not want to. A trained nurse who resently started last week doing these, took her over an hour to get it threaded thru. My arm was exhausted from hanging over the gurny (sp?). Next time, I will not allow a nurse to do it. Drs. are much faster and easier on the body. I will undergo a major surgery on Monday to solve my severe incontinence. My urologist will take part of my bowel and move it over and attached my urethers in this pocket he has created and I will cath from the hole; when not cathing will seal a bandaid over it. It is not the easier surgery where you wear a bag - an ostomy I think it's called is the easier one. I don't look forward to like my 10th surgery or more for one reason or another, but a much better life for me should be in the future after a 4 to 6 month recovery. So, I will miss you all say a prayer for me that all will go smoothly. If anyone else has had this done, please email and let me know if it's ok? Take care to all, Natalie M. -- Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.0/960 - Release Date: 8/18/2007 3:48 PM
Re: [TMIC] Wheelchairs
Maybe would could get a 'group discount'. :) Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: Kevin Wolfthal [EMAIL PROTECTED]; Tmic-list@eskimo.com Sent: Monday, August 06, 2007 8:34 AM Subject: Re: [TMIC] Wheelchairs The Ibot is on sale, Only $23,000 plus!! pH -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.6/938 - Release Date: 8/5/2007 4:16 PM
Re: [TMIC] Wheelchairs
Hi Regina, I'm not sure either of which is the better system. I understand that if you can afford the insurance in the USA that you are well taken care of. However I also understand that it can be quite expensive for the premiums. You are right that you do wait for a long time some surgeries. A lot of them actually. Some people who need hip or knee surgery wait for up to a year and maybe more in some cases. That is crazy. Yes, there are NOT enough doctors here in Canada. Not sure exactly why. I have read that some of the doctors who are new are going into specialized medicines or even research as they do not want to be GP's because of the hours etc. I have gone to the same GP now for 40 yrs and he is only a couple years older than me. Says he will be around for another 10 yrs. Not sure about that though. He has moved 3 times in those years within the mostly downtown area of Calgary. However, with Calgary growing so doggone fast these days rental prices etc are so high downtown that he has moved outside the downtown core. He said that the overhead was getting to be so high that he moved. It is actually the same timewise for me to get to him but actually easier as it is a quieter area and I don't have to pay for parking and there is more parking so that makes me quite happy. I only go to see him once a year even with TM. I see the physiatrist once every six months since TM and that is okay too. You say that housing etc is high where you are for the young doctors and I think that combined with setting up an office of their own is high too. I do not know what on earth the answer is. I just wish there were more young people getting into the medical field. We are short of nursing staff here too as well as many of the nursing homes are desparate for help. It doesn't seem to be just in Calgary either as most of my family live in Ontario and they are having the same problems with nursing, doctors too. Heather in Calgary - Original Message - From: Regina Rummel To: Heather Pieter Sent: Sunday, August 05, 2007 6:43 PM Subject: Re: [TMIC] Wheelchairs Frank Heather, I am trying to figure out whether you are better off in Canada or us in the US. The more I try to educate myself, the more confused I become. You both seem satisfied with your health care system. That's good. But we hear about many in Canada who have to wait a long time for surgery. That's bad. And one of you (don't remember who) said that there aren't enough doctors in Canada. How come? Is it because of that $150,000 cap Frank talks about? Incidentally, I'm told (where I live) that young doctors are having a hard time getting started because homes are horribly expensive. Taxes and insurance for doctors also very high, and so on... All this talk about reforming health care we hear from our presidential candidates is very interesting. I don't think we need to worry about socialized medicine. There is too much money in the status quo. Cynical as always. R Heather Pieter [EMAIL PROTECTED] wrote: Frank, You should only be paying 6% GST now. That changed when the Conservatives got in. In Alberta we pay only the 6% GST and no provincial sales tax. Not sure about the income tax or what the Cap on Doctors are. Right now I pay $64.00 (42.00 extended medical single + $22.00 alberta health care single) per month for health care insurance through my old employer (who is now paying me the Long Term Disability). All I pay for my medications is 20% with my Blue Cross Insurance picking up the other 80%. I can claim those payments on my income tax every year. When I have any kind of tests MRI's, blood work, x-rays etc etc I do not pay anything. I did not pay anything for my 2 month stay in the hospital. When I was in hospital it was really good. I had great care. From doctors, nurses, physiotherapist, occupational therapist, home care people etc etc. I was in the accute care section for 3 weeks until there was room for me in Rehab section. During that time (remember that the Foothills Hospital here in Calgary is a teaching hospita) several doctors brought around their students to examine me. I was more than happy for them to do this as I thought that is these young new doctors in training got to actually see a case of TM (who knows how many they 'would' see in their practice) that I hope they would recognize it. I say this as the first doctor who saw me for the first 12 hours in the hospital emergency didn't have a flipping clue what was wrong and was trying to send me to another hospital where my family GP has privileges. The following morning another doctor came on as the head one in emergency and he said there was definitely something seriously wrong and got a neurologist to come and look at me. When he saw me he did
Re: [TMIC] OT--Email test.
I got your e-mail. Heather in Calgary I'm wondering if Jude isn't getting things since she is very sick according to another e-mail here. - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Sunday, August 05, 2007 2:12 PM Subject: [TMIC] OT--Email test. I need to check this web mail to make sure that my posts and mails are going out. I don't think that Jude is receiving my list or personal mails. If not, I'll have to remedy it somehow. Grace -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.6/938 - Release Date: 8/5/2007 4:16 PM
Re: [TMIC] Wheelchairs
Frank, You should only be paying 6% GST now. That changed when the Conservatives got in. In Alberta we pay only the 6% GST and no provincial sales tax. Not sure about the income tax or what the Cap on Doctors are. Right now I pay $64.00 (42.00 extended medical single + $22.00 alberta health care single) per month for health care insurance through my old employer (who is now paying me the Long Term Disability). All I pay for my medications is 20% with my Blue Cross Insurance picking up the other 80%. I can claim those payments on my income tax every year. When I have any kind of tests MRI's, blood work, x-rays etc etc I do not pay anything. I did not pay anything for my 2 month stay in the hospital. When I was in hospital it was really good. I had great care. From doctors, nurses, physiotherapist, occupational therapist, home care people etc etc. I was in the accute care section for 3 weeks until there was room for me in Rehab section. During that time (remember that the Foothills Hospital here in Calgary is a teaching hospita) several doctors brought around their students to examine me. I was more than happy for them to do this as I thought that is these young new doctors in training got to actually see a case of TM (who knows how many they 'would' see in their practice) that I hope they would recognize it. I say this as the first doctor who saw me for the first 12 hours in the hospital emergency didn't have a flipping clue what was wrong and was trying to send me to another hospital where my family GP has privileges. The following morning another doctor came on as the head one in emergency and he said there was definitely something seriously wrong and got a neurologist to come and look at me. When he saw me he did the Babinski test on my feet (that is what I was told it was) and in my fog of morphine at the time all I remember of him was a large man in a suit with lots of bushy hair at the end of the bed and as he was leaving I heard him say she is not going anywhere and the word paraplegic. Now in my fog that DID strike fear. I am now able to walk without aids in the house, use a walker in the store or around a lot of people and a cane for more sane times. I use the wheelchair occasionally. When I turn 65 (in 3 more years - Aug 31, 2010 - yikes) I will not have to pay any health care premiums as it is covered for seniors here in Alberta. Hope this helps explain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Sunday, August 05, 2007 2:52 PM Subject: Re: [TMIC] Wheelchairs I had heard that you pay a lot of taxes toward your socialized medicine. Here in Montreal, we pay 15% tax, 8% provincial and 7% National, Sales Tax!! The income tax rises very quickly to 50%. The majority of physicians have a Cap. So after they have made- GROSSED- $150,000 ( or some other negotiated figure, depending on specialty) they don't get paid any more, except the cash with which I pay. F -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.6/938 - Release Date: 8/5/2007 4:16 PM
Re: [TMIC] Wheelchairs
I'm no longer in a wheelchair but do remember that was the way my husband was taught to do it with me in the chair. Go backwards down a stair. Heather in Calgary - Original Message - From: Larry Throne To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, August 04, 2007 8:00 AM Subject: Re: [TMIC] Wheelchairs If I am having someone help me down a ramp, I prefer them to tip me backwards and wheel me down only on my back wheels. It that is not possible I go backwards with help. Unless I know this is an ADA ramp then I can do it my self. Larry in Oklahoma From: natalie mizenko [EMAIL PROTECTED] To: Transverse Myellitis tmic-list@eskimo.com Subject: Re: [TMIC] Wheelchairs Date: Fri, 3 Aug 2007 16:43:52 -0700 (PDT) Pam, When u get paralyzed, how do you get back to walking?? I cud not walk at all if I tried. I am totally paralyzed from T12 down. Last weekend it was sorta funny in a way. I had been feeling better, had a break in my hard pain the day before. On Sat. nite my husband said Let's watch a movie downstairs? Well, it is only a full step and downstairs is carpeted. It is like a sunroom in a way but we always have used it like a den. It does have some wall between the windows. Anyway, he uses these 2 ramp things that he use to drive the automatic mower upon to work on it and get into the storage bldg. Anyways, we've done it before w/ my loner w/c, but not w/ this new one. He was taking me down very slowly and when we got to the bottom I flipped out and landed face down. But one leg had come in the front and one in the back. So, my head actually hit my leg mostly. Anyways, my husband picked me up (200 lbs. or a little, little less I am) and put me in the recliner. We still don't know what happened. I think my foot pedals are very low on this one so they don't wack the walls and they hit fast and out I went. It is funny to think about it now. I was a little shaken up at the time. Sorry for the novel, Natalie M. [EMAIL PROTECTED] wrote: MY HUSBAND IS ANGRY AND BITTER ALSO AT TIMES. WE WHERE 18 WHEN WE GOT MARRIED, HIGH SCHOOL SWEETHEARTS. I WAS THE ONE WHO ALWAYS GOT CALLED BY EVERYONE WHEN SOMEONE WAS ILL I STILL AM. WE WILL BE MARRIED 38 YEARS JAN.31 ST. I AM BETTER OFF THAN YOU AND HE DOES NOT UNDERSTAND WHY ME. WHAT UPSETS ME AS I AM SURE WE NEED THEM MORE FOR THINGS WE CAN NO LONGER DO. HE IS BETTER ABOUT IT NOW BUT HE DOES HAVE HIS MOMENTS. I AM LIKE YOU I DO THINGS AND THINK POSITIVE. I KNOW I CAN DO SO MUCH MORE THAN YOU AND I ADMIRE YOUR COURAGE AND STRENGTH .I FEEL THERE IS A REASON FOR EVERYTHING. I AM GOING TO BE 56 NEXT MONTH. I HAVE HAD MANY EPISODES OF TM THRU THE LAST 15 YEARS. I GET PARALYZED AT ANYTIME. BUT I ALSO HAD MANY MANY GREAT YEARS. I PRAY AND HOPE YOU NEVER HAVE ANOTHER EPISODE. OUR HUSBANDS ALSO HAVE TO VENT. I KNOW THEY DO A SURGERY SIMILAR BUT ON YOUR COLON A COLONOSCOPY. HER WHOLE IS TINY AND SHE JUST WEARS A BIGGER BANDAID ON IT. SHE TRAINED HER BODY TO DO THAT. I ALSO KNOW A GIRL WHO HAS NO BLADDER. SHE URINATES WHEN SNE HAS A BOWEL MOVEMENT. THERE IS SO MUCH TECHNOLOGY NOW I THINK WE WILL BE OK. KEEP UP THAT GREAT ATTITUDE, I KNOW YOU WILL DO FINE WITH YOUR SURGERY. GOD BLESS YOU TIAD PAM Get a sneak peek of the all-new AOL.com. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. -- Tease your brain--play Clink! Win cool prizes! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.4/936 - Release Date: 8/4/2007 2:42 PM
Re: [TMIC] Wheelchairs
Natalie, Yes there is definitely a shortage of doctors in Canada. I have a friend who has had two back surgeries and now has severe headaches and has now been told he has osteoarthritis in his neck. He has been waiting for over a year to see a neurologist. GP's can refer you to one but the waiting list to see one (unless you are in hospital and near dying or like me when TM hit and I was just 'out of it'). Yes, you can get a private MRI if you want to pay between $1,000. and $2,000. for one. I think that is what it is anyway. To get an MRI from your own doctor can take months too. The wait lists are long. For knee surgeries people wait 8 to 12 months sometimes more. It is crazy. Not sure which health care system is the best. Yours or ours. Yes we pay low rates and wait long times and don't pay much $$ in the end but a lot of people waiting for elective surgeries wait for months on end unless it is something 'life threatening'. Heather in Calgary - Original Message - From: natalie mizenko To: Heather Pieter Sent: Friday, August 03, 2007 5:33 PM Subject: Re: [TMIC] Wheelchairs Heather, Why do you have to wait 6 mths. for an appt? Does Canada have a shortage of drs? I was suprized to hear this from Canada. Natalie M. Heather Pieter [EMAIL PROTECTED] wrote: Wow Kevin. You are lucky to be able to have MRI's in the USA. Here we would never cancel and MRI unless really really sick as we would have to wait for another 6 months or more for one. Unless of course it was a life threatening situation and you were in danger of dying. Hope they find out what is wrong. Heather in Calgary - Original Message - From: Kevin Wolfthal To: Sent: Tuesday, July 31, 2007 3:20 PM Subject: Re: [TMIC] Wheelchairs Natalie, I wish I knew why my hands are going numb! First I was told by a neurologist and an orthopedist that it was carpal tunnel syndrome, and ulnar nerve damage, based on EMG results. When I went to the hand surgeon, he sent me for another EMG, and I was told there is damage in many sensory nerves in my arms, so the surgeon said it may not be carpal tunnel, and he wouldn't operate. So now I'm starting all over with new doctors, new tests, and I am fed up with everything. I was supposed to have an MRI of my neck yesterday, but didn't feel well so cancelled. I had a physical a few weeks ago, and my blood tests came back perfect. Even my cholesterol was only 177, which surprised me. Sorry I can't offer anymore help. The last MRI I had of the neck showed a lot of arthritis, but the neurologist said that isn't causing the numbness in my hands. *shrug* Wish you the best, Kevin natalie mizenko wrote: Kevin, Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my Pic line taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. */Kevin Wolfthal /* wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare
Re: [TMIC] OT Lammas Day
okay, I am going to ask. What is Lammas Day?? Heather in Calgary - Original Message - From: Larry Throne To: Tmic-list@eskimo.com ; [EMAIL PROTECTED] Sent: Wednesday, August 01, 2007 5:01 AM Subject: [TMIC] Lammas Day Happy Lammas Day ! From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Subject: Re: [TMIC] Wheelchairs Date: Tue, 31 Jul 2007 23:20:07 -0400 There was no way I was going, I was nauseous and felt like I was going to pass out. Where I live they have an MRI lab on every other street corner. Why not when they charge thousands of dollars for one test, and they love me because I have insurance that covers it. I still don't feel lucky somehow. Thanks for your kind thoughts. Kevin Heather Pieter wrote: Wow Kevin. You are lucky to be able to have MRI's in the USA. Here we would never cancel and MRI unless really really sick as we would have to wait for another 6 months or more for one. Unless of course it was a life threatening situation and you were in danger of dying. Hope they find out what is wrong. Heather in Calgary - Original Message - From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Tuesday, July 31, 2007 3:20 PM Subject: Re: [TMIC] Wheelchairs Natalie, I wish I knew why my hands are going numb! First I was told by a neurologist and an orthopedist that it was carpal tunnel syndrome, and ulnar nerve damage, based on EMG results. When I went to the hand surgeon, he sent me for another EMG, and I was told there is damage in many sensory nerves in my arms, so the surgeon said it may not be carpal tunnel, and he wouldn't operate. So now I'm starting all over with new doctors, new tests, and I am fed up with everything. I was supposed to have an MRI of my neck yesterday, but didn't feel well so cancelled. I had a physical a few weeks ago, and my blood tests came back perfect. Even my cholesterol was only 177, which surprised me. Sorry I can't offer anymore help. The last MRI I had of the neck showed a lot of arthritis, but the neurologist said that isn't causing the numbness in my hands. *shrug* Wish you the best, Kevin natalie mizenko wrote: Kevin, Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my Pic line taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. */Kevin Wolfthal [EMAIL PROTECTED]/* wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare Torque SP' to be the best chair I have ever had over 17 years. It can come in a variety of setups for your maximum comfort. Check it out online at: http://www.usatechguide.org/itemreview.php?itemid=89 Peace, Bernie Kevin Wolfthal wrote: Hi Grace, i don't have a wheelchair, but don't think I can put it off much longer. Do you mind if I ask what kind you have? I'm pretty sure I will need a power chair because my hands are going numb. ;-/ Kevin
Re: [TMIC] Drugs
now you're talking. :) - Original Message - From: Trudy To: 'Grace M.' ; tmic-list@eskimo.com Sent: Saturday, July 28, 2007 7:21 AM Subject: RE: [TMIC] Drugs I also gained weight on Neurontin.. . tho scientifically speaking dark chocolate cures everything. -- From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Saturday, July 28, 2007 10:07 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Drugs Well, I had heard that Honey Grahams could remedy almost any symptom, but after two years of experimentation, well let's just say that it ain't pretty On 7/28/07, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: In a message dated 7/28/2007 8:04:56 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: I find decreasing the donuts helps, too. F Too bad someone can't find that donuts is a cure for something. Barbara H. http://barbarah.wordpress.com/ -- Get a sneak peek of the all-new AOL.com. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.22/923 - Release Date: 7/27/2007 6:01 PM
Re: [TMIC] no mail??
I think that everyone is trying to enjoy the summer weather. Whether it is hot and sunny like here or rainy and cool somewhere else. I find that with the weather like this I do not have as much trouble moving around. It is the cold that makes life more miserable so I'm loving this summery weather for as long as we have it. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, July 24, 2007 8:05 AM Subject: [TMIC] no mail?? Havent received mail in 3 days. Whats up?? -- Get a sneak peek of the all-new AOL.com. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.17/915 - Release Date: 7/24/2007 1:50 PM
