Re: [TMIC] Meds question
Craig, I have taken Gabapentin/Neurontin since Sept 03, when I got TM. I take 2400 mg in 4 divided doses at 7am, noon, 5pm, 10pm (or thereabouts). This helps with the pain of burning/pins/needles feelings. I did try to switch to the Lyrica as a replacement for the Gabapentin about 2 years ago however I was in the 7% (according to my neuro) that the swelling of the legs and feet was a problem. For the spasms I have taken Baclofen 40mg in 4 divided doses every day. I started out at 80mg back in 03 but have managed to reduce it. I know Frank doesn't care for these meds. However, we are each different in our chemical makeup and require different meds. I was told a long time ago through the TM Forum that these two meds were the first ones tried. Hope this info helps you. Heather in Calgary - Original Message - From: Rev. Craig Crossman To: tmic-list@eskimo.com Sent: Tuesday, August 03, 2010 11:51 PM Subject: [TMIC] Meds question Does anyone else have any experience with taking Tramadol (a type of morphine I think) and/or hydrocodone for pain relief with TM? Are there any options anyone could suggest? I have been taking both for over a year in increasing doses, and I am now averaging eight to twelve Tramadol (50 mg) and two hydrocodone (5/500) every day but they no longer seem as effective as they were. I am also having to work with a primary care physician and nurse practitioner, neither of whom has any experience with TM, but they are all that are available in our community. The nearest neurologist is over two hours away so I do not get to consult with her very often. It is a pain to have to educate my providers, but it seems to be the only choice at this time. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] Heat
Janet, I'm not really wise.. :) I just go to Environment Canada and check the temps. It is usually in Centigrade but then if you click on the C it will convert it to Farenheit. However, a quick way I convert when not near the computer is I double the current Celcius then add 32 degrees and minus about 4 degrees. Example. plus 29C would be 29 plus 29 plus 32 - 4 equals approx 86 Farenheit. LOL Yes, I too prefer the heat to the cold. Right this minute it is 12:34 pm. Calgary time. The Celcius temps is plus 16 C or 62 F according to Environment Canada. It has been quite cool here in Calgary this summer with a ton of big thunderstorms, large hail and wind and that is all in one day. For the first time in it's 98 year history the Calgary Stampede had to cancel the evening Chuckwagon races and the big Grandstand show due to rain, wind, hail, etc. Unlike Eastern Canada who have been sweltering in hot very humid conditions. I prefer this cooler version of summer. Even with the rain because my muscles do not seize up as much as they do in the winter with the cold and snow. Wherever you are fellow TMer's I hope you are all having a good day. Heather in Calgary - Original Message - From: Janet Dunn To: 'bobby jim' ; 'Rev. Craig Crossman' ; tmic-list@eskimo.com Sent: Monday, August 02, 2010 10:36 PM Subject: RE: [TMIC] Heat I know the heat is tough on us with TM, what weather isn't? But . . . I much prefer the heat to the cold. Of course where I live it doesn't get that hot, only around 29 Celcius, and I am sorry to my American friends but I am not sure how much that is in Farenheit. Perhaps around 85? Heather from Calgary will know, because Heather, you are wise. Janet From: bobby jim [mailto:elbobber...@earthlink.net] Sent: August 2, 2010 7:05 PM To: Rev. Craig Crossman; tmic-list@eskimo.com Subject: Re: [TMIC] Heat Well, here in Elvisland, my back yard (in the shade) hit 99.7º a bit after 12 noon. At 8:30 PM it was down to 91.0º.. Wow. BobbyJim, running around the house in his 'underwear';);) From: Rev. Craig Crossman To: tmic-list@eskimo.com Sent: Monday, August 02, 2010 19:35 Subject: [TMIC] Heat OK - I am getting close to surrender. I drove to Wichita, KS today (5.5 hours from Colby) for a conference. At 9AM it was 94 degrees; upon arrival in Wichita it was 108 degrees! I'd wave a white flag but I'm busy using it to fan myself. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] I am fine
Saroj, I too am glad to see your name and hear from you. I remember when I got TM 7 years ago seeing your name and hearing of your legal troubles back then. It sounds like a long hard battle but you persevered and wond. Congratulations. I hope now for happier times for you. It is good to know your diabetes and hypertension are under control too. I thought you were also having difficulties getting some medications however, I could be wrong in that regard. Please do keep us updated from time to time. It is good to see you here on the list once again. Heather in Calgary, Alberta, Canada - Original Message - From: Saroj Kumari To: tmic-list@eskimo.com Sent: Monday, August 02, 2010 1:40 PM Subject: [TMIC] I am fine Hello friends, I have just survived a 6 years long drawn legal battle with our tenant .Finally won the case only a couple of weeks ago.I was very depressed during this period.As regards my transverse myelitis,I have increasing walking disability can't do without my walking stick when I go out to do my outdoor tasks.I have well controlled diabetes and hypertension.I am very sorry for I have not been able to write to the very dear members of the list. Saroj
Re: [TMIC] pause from the cause
I feel pretty much like Patti. There are never any pain free times however there are times that I can get engrossed in reading, sewing, crocheting etc and don't think of the pain. However, then I go to move or do something else and 'Shazam' is the right word. Nothing wants to move and it all hurts. Thank goodness for the engrossing times. Heather in Calgary - Original Message - From: pjv1...@chartermi.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Monday, August 02, 2010 6:03 PM Subject: Re: [TMIC] pause from the cause I am never pain free, however, I have moments when I didn't think about the pain. Then shazam ! Patti - Michigan john snodgrass jcs...@yahoo.com wrote: Does anyone ever have moments that they don't feel anything? Moments of no pain but then you move and shazam! there it is again?
Re: [TMIC] Test
received loud and clear here in Calgary - Original Message - From: Bill and Mollie Wimberly To: tmic-list@eskimo.com Sent: Thursday, July 29, 2010 4:35 AM Subject: [TMIC] Test Let me know if you receive this. Thanks Bill
Re: [TMIC] OT - need prayers after seeing video will understand why
Bernie, You and your family are in my thoughts and prayers. How terribly devastating for everyone. Heather in Calgary - Original Message - From: Bernard Pelow To: TMIC Sent: Sunday, July 18, 2010 2:03 AM Subject: [TMIC] OT - need prayers after seeing video will understand why Yesterday my ex wife and daughters duplex went up in flames. It started in their neighbors part, unknown origin as of right now as to the cause. Please keep them in your prayers, Red Cross has them in a hotel for 5 days and then they are on their own. It was a total loss, and that was their car too that was melted to nothing. Both are disabled; Sara has auto immune like me, Sally my ex wife lost 2/3's of her right lung and both breasts to cancer and they are worried it is in her lymph glands. And now this... Life is cruel... http://www.youtube.com/watch?v=-N93sIqERB0
Re: [TMIC] Iron traped in brain -
pHranq3ue, You using these goats/sheep for trading? Or are the goats/sheep to keep the lawn clipped at Muskoka? Heather in Calgary - Original Message - From: fr...@franksheldon.com To: Todd Tarno Cc: tmic-list@eskimo.com Sent: Sunday, July 18, 2010 2:18 PM Subject: Re: [TMIC] Iron traped in brain - Sounds BOGUS to me. Iron has nothing to do with TM- It's Auto-immune Inflammatory Demyelination- with no indication of the presence of IRON. Now, I'm on Vacation, so I don't want to be bothered by other's problems. I have enough of my own. My daughter's getting married next week and can't find enough goats ( are sheep acceptable?)or blankets. Sorry to bother you all with my problems, pHranq3ue
Re: Re: [TMIC]
I had to work my way up to the 4mg of Zanaflex that is for sure. Started out with 2 mg at bedtime, then 2 mg at 6pm and 2mg at bedtime. Couldn't handle the 2mg at 6pm..I fell asleep talking to my sister-in-law, was a tad embarrassing. So used the 2mg at bedtime then went to 4mg at bedtime. I think I get a better sleep. Apparently the effects of it are supposed to wear off in about 3 hours or so. With the effects it had on Todd, it just goes to show that we are all not built the same. Heather in Calgary - Original Message - From: Todd Tarno To: TMIC Sent: Monday, July 12, 2010 12:12 PM Subject: Fw: Re: [TMIC] The Zanaflex @ 4 mg made me sleep for 17 hours. Now trying, Methocarbam @ 500 mg at night. Saw an Urology, will be getting a new medication from the pharmacy, but don't know the name yet. He does have other patients that have TM. Will let everyone know what medication that I do good with, once we find out what that is. lol Hope everyone is doing better, today, Todd in CC, TX --- On Sat, 7/10/10, Pieter and Heather pieterheat...@shaw.ca wrote: From: Pieter and Heather pieterheat...@shaw.ca Subject: Re: [TMIC] To: Rebecca wrabal...@gt.rr.com, tmic-list@eskimo.com Date: Saturday, July 10, 2010, 4:41 PM Rebecca, There is also the medication Zanaflex. It helps with spasms as well. I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too. There are others who do take more Zanaflex as well. However both the Zanaflex and the Baclofen can affect your liver enzymes so you will need to have them checked regularly as well. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 2:34 PM Subject: [TMIC] Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg and back. At one time amputation was discussed. Then a baclofen pump. That was shot down because of open bed wounds. So botox and baclofen are going to be tried.The dosage will be 10mg 2X a day of baclofen do not know about botox.
Re: [TMIC] Baclofen Dosage
Patti - Wisconsin, I take it to help with the muscles spasms and it helps relax the muscles in my legs. Apparently it helps relax the bladder as well. Heather in Calgary - Original Message - From: Patricia Cooley patticoole...@gmail.com To: pjv1...@chartermi.net; 'tmic' tmic-list@eskimo.com Sent: Saturday, July 10, 2010 9:09 AM Subject: RE: [TMIC] Baclofen Dosage I HAVE A QUESTION TO ALL OF YOU TAKING BACLOFEN. WHY DO YOU TAKE IT AND WHAT DOES IT HELP. I MENTIONED TO MY NEURO AND HE SAID IT WOULDN'T BE OF ANY BENEFIT TO ME. SINCE I MOVED AND WILL HAVE TO CONNECT WITH A DIFFERENT NEURO, I WILL DISCUSS IT WITH HIM WHEN I DO. THANKS FOR YOUR HELP. PATTI - WISCONSIN -Original Message- From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] Sent: Saturday, July 10, 2010 6:22 AM To: tmic Subject: [TMIC] Baclofen Dosage I take 10mg Baclofen every 8 hours. This amount causes the least amount of mental confusion and drowsiness. Patti - Michigan
Re: [TMIC]
GlacierRebecca, There is also the medication Zanaflex. It helps with spasms as well. I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too. There are others who do take more Zanaflex as well. However both the Zanaflex and the Baclofen can affect your liver enzymes so you will need to have them checked regularly as well. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 2:34 PM Subject: [TMIC] Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg and back. At one time amputation was discussed. Then a baclofen pump. That was shot down because of open bed wounds. So botox and baclofen are going to be tried.The dosage will be 10mg 2X a day of baclofen do not know about botox. Glacier Bkgrd.jpg
Re: Fw: Re: [TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW
Wow Betty. That is wonderful news for you. And yes I wish for success for this little girl. I too hate to hear of the little children or any children getting TM. Heather in Calgary - Original Message - From: Beeclark To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 8:26 PM Subject: Fwd: Fw: Re: [TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW I should think it works the same way my tendon transfer worked for my right hand. After TM visited me in April 2006 and I spent a month in a rehab facility, all four fingers on my right hand 'dropped' at the hand knuckles. I couldn't lift my fingers up when my palm was facing the floor, nor open my [permanently?] cupped hand without manual assistance. My occupational therapist recommended me to a wonderful sports medicine surgeon who, with the guidance of a Stanford surgeon, performed a 2-part tendon transfer on my right wrist in September of 2008 and October of 2009. Using a lesser tendon in my arm, he transferred its' function to take over for the damaged one. After several hand/arm splints and therapy sessions, the result is I can now open and close my fingers - though I am still working on bending the end joints completely - i.e. making a fist. The added function has been a God-send... I can now grip things between my fingers and thumb [like the zipper of my pants], pick up things, etc. The nerve transfer for little Sadie may conceivably work in the same way, possibly even better since she's so young and likely more adaptable to therapy than someone my age [57]. My prayers and best wishes go out to her and her parents. It's hard enough on those of us who've had the advantage of living some number of years as a 'whole' person, but for someone so young and in the infancy of life to be struck down by TM... that offends my senses. If these doctors have discovered a possible fix for the lack of function we TM'rs are left with, HALLELULAH!!! I anxiously await hearing about her recovery. Betty (in Northern California)
Re: [TMIC]
GlacierWOW Dalton. You take 100mg of Zanaflex a day??? That seems like a lot. Heather in Calgary - Original Message - From: Dalton Garis To: 'Pieter and Heather' ; 'Rebecca' ; tmic-list@eskimo.com Sent: Saturday, July 10, 2010 8:44 PM Subject: RE: [TMIC] All; My Epanutin is actually Zanaflex. I take 100 2x/day Dalton Garis Office: +971-2-607-5070/-5297 Fax: +971-2-607-2500 Mobile: +971-50-668-5760 In New York: 718-271-2738 -- From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Saturday, July 10, 2010 5:42 PM To: Rebecca; tmic-list@eskimo.com Subject: Re: [TMIC] Rebecca, There is also the medication Zanaflex. It helps with spasms as well. I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too. There are others who do take more Zanaflex as well. However both the Zanaflex and the Baclofen can affect your liver enzymes so you will need to have them checked regularly as well. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Saturday, July 10, 2010 2:34 PM Subject: [TMIC] Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg and back. At one time amputation was discussed. Then a baclofen pump. That was shot down because of open bed wounds. So botox and baclofen are going to be tried.The dosage will be 10mg 2X a day of baclofen do not know about botox. image001.jpg
[TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW
On the TM Forum today there was this link. It is about a little 4 yr old girl with TM and a first ever surgery to see if it can help her walk. WoW. Heather in Calgary http://www.wbaltv.com/health/24188659/detail.html
Re: [TMIC]
GlacierRebecca, I know that a lot of us use Baclofen. However each of us depending on our chemical makeup etc take different amounts. When I first got TM 7 years ago I took 80 mg per day in 4 divided doses. I then cut it down to about 20 mg however find that using 40 mg per day now in 4 divided doses helps me the most. You are going to get different answers from each person. What does your physician recommend to start with?? It is something that you might start out low and then go a little higher depending on the help you get from it. Heather in Calgary - Original Message - From: Rebecca To: tmic-list@eskimo.com Sent: Friday, July 09, 2010 9:13 PM Subject: [TMIC] I have a question. How many mg. are you taking of bacolfen? I am not sure at what dosage would I benefit from. ThanksGlacier Bkgrd.jpg
Re: [TMIC] unsubscribe
Sally, go to this website http://www.myelitis.org/tmic/index.html#unsubscribe and it tells you how to unsubscribe. Hope this helps Heather in Calgary - Original Message - From: Sally Wilkinson To: tmic-list-requ...@eskimo.com Cc: tmic-list@eskimo.com Sent: Thursday, July 08, 2010 7:28 AM Subject: [TMIC] unsubscribe I have been trying to unsubscribe for days as I am going on holiday, and will get into trouble if all the messages keep coming through on this work computer. I can not seem to do this.this time and have any trouble in the past! Cheers Sally Wilkinson Business Development Manager Genesis Design The Barn Ipsden Oxfordshire OX10 6AS +44(0)1491 682277 sally.wilkin...@genesisdesign.uk.com
Re: [TMIC] I'm back!
Oh Jeron,
You have made me so happy to read this letter.
I have wondered how you were doing.
Thank you for letting us know how you are.
Wow!! What a journey you have had.
To meet Christa and to be able to help her while all along she in some way was
helping you too.
I'm sure that you and Christa will stay in touch.
Please let us know how she makes out at John Hopkins if possible.
Enjoy yourself with some relaxing at home with you wife and your cat.
{{Hugs}}
from Heather in Calgary
- Original Message -
From: j ra
To: Transverse Myelytis
Sent: Monday, July 05, 2010 7:40 AM
Subject: [TMIC] I'm back!
Hi guys,
A couple of months ago I left Brasil for the Caribbean to spend some time
alone and try to rediscover life before TM. It's been tough, especially because
I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's
called xanaflex elsewhere) no valium, just sleeping pills. I know most of you
thought I was pushing my wife away, but she's been really understanding as to
why I needed to regain some independence. I did all the things I said I was
going to do and I proved that TMers still have a lot of life in them. I know I
am lucky to be a walker, allbeit with a cane, but we are strong people. As a
group, we can do anything and we are always going to be there for
eachotherno matter what. I really think that without you guys, I could not
complete my journey, so thanks!
Here's the weird part, I found a little girl with TM in Trinidad, my home
country in the Caribbean. I saw an article about her in the newspapers and
decided to contact her parents. I met them. The kid's name is Christa. She is
10 years old and has been diagnosed with TM some 10 months now, but her family
does not have the money for treatment and treatment is not available in
Trinidad. So they've been battling with this thing of ours all the while
without proper care, so I got involved. Christa, is the sweetest little kid I
ever met, she makes your heart melt with her innocent smile and she's so upbeat
all the time, despite being in a wheelchair. She has the strenght that I think
I was looking for all along. Imagine, I actually thought that while I was there
I was going to do everything in my power to help her, but all along she was
helping me.
Her parents managed to raise somewhere near $12 US already and they plan
to take her to Johns Hopkins. I got in contact with the doctors there and they
are ready to accept her case.
So, I'm not sure what actually happened to me over the last few months, but I
think I found what I was looking fornot in a selfish journey to the
islands, but in the eyes of a child.
Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for
a bit then take my wife out for lunch, then take her to the FIFA World Cup
finals in South Africa. Another journey perhaps, this time with my wife!
Bye guys,
Jeron
--
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up
now.
Re: [TMIC] Wheels in Motion pictures.
Laura, Are you in any of the photos. Good job. Heather in Calgary - Original Message - From: Laura Beaudin To: tmic-l...@eskimo.net ; Transverse Mylitis Group ; msersl...@yahoogroups.com ; f...@yahoogroups.com Sent: Monday, June 14, 2010 6:12 PM Subject: [TMIC] Wheels in Motion pictures. The Rick Hansen Wheels in Motion is a Canadian fund-raiser to help people with spinal cord injuries and related research. Rick Hansen lost his ability to walk after a spinal cord injury, and later went on to circle the globe in his wheelchair to raise SCI awareness. I was in charge of the photography for the Edmonton walk yesterday, and wanted to share the pictures. http://www.flickr.com/photos/khaleeka/sets/72157624145599459/ Cheers! Laura http://practical-homeschooling.org www.laurascoolstuff.com
Re: [TMIC] EFT
Akua, I have never heard of EFT. Is it a medication? Heather in Calgary - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Friday, June 04, 2010 10:29 PM Subject: [TMIC] EFT Has anyone used or tried EFT? --
Re: [TMIC] OT bed question
Hi Kevin, About 18 months ago we purchased a new bed. It is a firm mattress with a pillow-top. We are both finding it most comfortable. Previously we had a firm bed without the pillow-top. Even my husband who does not have TM found the old one was hard on his shoulders and hips. I know that there are special beds as well if you are concerned about bedsores etc. From what I remember you are confined a lot of the time to bed. I'm sure there are others who will be able to give you mroe advice. Perhaps too you could check with your homeand health stores. Or even with a doctor of physio or health care person. I'm sure there are beds out there that would be good for you with the problems we all deal with with TM. Let us know what you finally decide to do. Heather in Calgary - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Tuesday, June 01, 2010 10:10 AM Subject: [TMIC] OT bed question Hi Friends, I'm sorry I haven't been on as much as I'd like. I'm trying to figure out my life now which is very different, and feel a bit lost. I was wondering if anyone could advise me. I need to buy a new bed as mine is caving in and hurting my back. I can't get out to bed shop, but I've heard that Sealy Posturepedic makes the best mattress, and someone on tv recommended medium hard? I'd like to hear your opinions. Thanks, Kevin
[TMIC] Calgary Herald article regarding Spinal chord 'self-repair' - Interesting
Interesting article regarding Spinal chord 'self-repair' in our daily newspaper here in Calgary today May 31. Research out of the University of Alberta faculty of rehab medicine in Edmonton. Heather in Calgary http://www.calgaryherald.com/news/Spinal+chord+self+repair+revealed/3091670/story.html
Re: [TMIC] Anyone Remember Jude?
Hi Jude,
Good to hear from you. Of course we all remember you.
Have been wondering how you are doing.
Was going to ask Patti V. next time I talk to her if she has talke to you
recently.
I know you were having computer problems a while back.
Glad you have them solved and are back on line.
Hope you are doing okay.
{{Hugs}}
Heather in Calgary
- Original Message -
From: Jude Hoops
To: tmic-list@eskimo.com
Sent: Wednesday, May 26, 2010 5:05 AM
Subject: [TMIC] Anyone Remember Jude?
Hello Friends-Old and New,
I have missed you all so much! As like most of you, I have been battling TM
and other illnesses like MS, with all of the problems that go with it. It is
no fun...and that's not what kind of email this is intended to be.
Sorry I still have no picture to post, but promise to look for a decent one
tomorrow. I know I have one or two decent ones laying around.
Re: [TMIC] alive
Jeron, Good for you. This is a positive message. I think your first message had me concerned for your life, as in suicide. Leaving your wife and loved ones who were concerned for you. I'm so glad that I was wrong. Go for it. Do what YOU need to do to come to terms with TM. Keep us up to date on your adventures. Heather in Calgary - Original Message - From: j ra To: Transverse Myelytis Sent: Friday, May 21, 2010 3:23 PM Subject: RE: [TMIC] alive Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support. I love you guys very muchyou are my family! Jeron -- Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] Where TM struck
Living in Calgary. Age 58 when got TM. Grew up from age 7 to 21 in Hamilton Ont. Steel town. Lived within 3 blocks of factories from 1952 until 1966. Lots of smog and pollution. Father who worked at steel plant had Rheumatoid Arthritis. I got TM at age 58. My middle sister (3 yrs younger ) diagnosed with TM at age 43 in 1991. My youngest sister (7 yrs younger) diagnosed with Ulcerative Colitis at age 19 in 1972. All the above are autoimmune conditions. I have often wondered if it has anything to do with where we grew up. Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, May 17, 2010 10:04 PM Subject: [TMIC] Where TM struck I did not get many replies to my asking where people were living when TM struck them. Actually, it was really scattered. Sorry. Janice
Re: [TMIC]I tried Marinol too
My doctor tried me on Cesamet. However, he told me it would make me tired and also I could feel like I was 'drunk'. Well, I only took one pill. At night. I went to bed, woke up to go to the bathroom, was sooo tired that I could barely make it out of bed, literally 'staggered' down the hallway bouncing off the walls, felt like I was very very drunk, the room spinning, staggered back to bed and finaly got out of bed at 5 pm the following day only to be tired and back to bed early. I decided that it didn't work for me. The doctor then had me dilute the med in juice and titrate up. Didn't work for me either. End of Cesamet. It is a form of medical marijuana I think. Heather in Calgary - Original Message - From: Janice Nichols To: Janet Dunn ; fr...@franksheldon.com ; 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 9:54 PM Subject: Re: [TMIC]I tried Marinol too What is cesamet and what does it do for you? Janice From: Janet Dunn Sent: Monday, May 17, 2010 9:52 PM To: fr...@franksheldon.com ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC]I tried Marinol too I was on cesamet. Janet From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: May 17, 2010 1:07 PM To: Janet Dunn; 'Janice Nichols'; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC] Neurontin
NeurontinJanet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn To: 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet From: Robert Pall [mailto:rp...@neillsupply.com] Sent: May 17, 2010 5:43 AM To: tmic-l...@eskimo.net Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
NeurontinRobert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
NeurontinRobert, I can see why you would be confused too. Is he having you take Lyrica AND the Neurontin together? Hmmm I am not familiar with the AMPYRA. I know that some people have had problems with the side effects of the Cymbalta too. Keep us all posted on how things go with you. Is there a reason he is trying these changes? Have you had more problems with pain etc.? Wow, 9 TM'rs together. That IS quite amazing. I have only met a few in a one on one. Not too many around here to get together at one time. Not a lot that I am aware of anyway. We seem to be quite spread out here in Canada. At least people who have subscribed to the TM site anyway. Have a good day. It is going to be nice and warm here again (FINALLY) today. Supposed to be in the mid-20's Celcius. That is somewhere in the 70's Farenheit. It has been lovely the last few days too. This old TM body moves so much easier in this warmer weather. The muscles surely don't tighten up as much and they loosen up easier. Heather in Calgary - Original Message - From: Robert Pall To: Pieter and Heather ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 8:24 AM Subject: RE: [TMIC] Neurontin Heather...I am just so confused.I am starting to believe that the best combinatuion I have used up to now has been Lyrica and 4- Aminopyridine (now AMPYRA). Dr Kerr was going to put me back on these 2 but he first wanted to see how Cymbalta instead of Aminopyridine agreed with me...to cut to the chase I found the Cymbalta was helping but the side effects were offsetting. I figure I will try the neurontin which i believe I took 8-10 years ago...who can remember?.If I see no help with the banding I intend to try the combination of Lyrica and Ampyrafor me Lyrica has been the most effective drug I take ttat for me has no side effects! To be continued! By the way we had our 4th New Jersey TM Support group meeting yesterday with 9 TM'rs attending some with parents or spouses.We spent 3 hours discussing what TM has done to our lives, the meds we take and the Doctors we see...and what we think of them.as always a special and emotional meeting. It is so rare to put this many people together who understand eachother and are able to relate. As always I recommended them going to our website and subscribing. All the best! Rob in New Jersey -- From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Monday, May 17, 2010 10:11 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Robert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] TM
Candis, I grew up in Hamilton Ontario from age 7 to 21. It was a steel town and so lots of pollution. I too wonder about the 'air' we live in while growing up. Heather in Calgary - Original Message - From: CANDIS KALLEY To: TMIC-LIST Sent: Thursday, May 06, 2010 10:35 PM Subject: Re: [TMIC] TM I don't think that where we lived when TM struck is the only underlying factor. I was watching CNN and the doctor, Dr. Grupa?, said that they have studied the cord blood of newborns and they have found that the cord blood contained over 200 chemicals, not body chemials but harmful chemicals - contaminated newborns is what they called the newborns. The Dr. also said that there are thousands of chemicals that are in our food, air, clothing, cleaning supplies, etc. that have NOT been studied to make sure that they are not harmful. A Congressman has submitted a bill that will not allow any chemical to be used until the chemical is proven not harmful - as it stands now, a chemical is put into use and used until it is proven to be harmful! So we are all guinea pigs for the industries. For myself I believe that I had the bad genes for my auoimmune sstem but also just 75 days before TM struc me, I had a botched surgery then a follow-up successful surgery 30 days later. In between the surgeries, I had an allergy reaction to the meds that they gave me. After the successful sugery, I went back to work early - due to deadlines which resulted in stress! Added to that were the holidays stress - Thanksgiving and Christmas. I think another factor was that the hospital where I had the botched successful surgery was under major remodeling - the surgery rooms where right next to a major area being remodeled. I grew up in Indianapolis, IN. I can rememer the different smells in the air - just to name a couple, a creasol pole coating factory, a couple of slaughter houses, meat processing, medical processing, bakeries (Wonder bread and others). I lived there for over 20 years. My daughter was born there and as a baby she had so many attacks of broncitis (sp?) BUT as soon as we moved here in SW FL when she was 2, the attacks stopped. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thursday, May 6, 2010 10:55:00 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] My Son
Janet,
My heart goes out to your son, yourself and your family.
I wonder why it has taken a whole year to diagnose him.
I don't know if TM is hereditary. However I figure that there is a big
connection with autoimmune conditions in a family. I have TM (I'm 65 this
year) TM since 2003, my sister 3 years younger has MS, diagnosed in 1991, my
sister 7 years younger has Ulcerative Colitis, diagnosed in 1972, my father had
Rheumatoid Arthritis. These are all autoimmune conditions.
My daughter purchased some extra health insurance sor hereself this past year.
She had to declare any conditions in the immediate family, parents, siblings
etc. Since I have TM they would not insure her health against MS. So that
tells me that the insurance people also figure there is a connection.
You have every right to feel all your emotions of sad, hurt and angry. Now
that they have diagnosed him I do hope that the doctors will be able to help
him with medications to relieve some of his pain and fatigue if he is not
already on meds for these issues.
Please keep posting and use us as one of your sounding boards. Perhaps seeing
a professional to help you and your son deal with the psycological effects that
this disability takes on us could help as well.
{{{Hugs}}} to you and your son and family
Heather in Calgary
- Original Message -
From: Janet Dunn
To: 'Transverse Myelytis'
Sent: Thursday, May 06, 2010 10:30 AM
Subject: [TMIC] My Son
Hello all you fellow TM'rs.
It is with such a heavy heart, and with tears rolling down my face that I
write this.
My 15 year old son, who has struggled with his legs for a year now,
undiagnosed, has finally been diagnosed. While it is not life threatening, it
is TM.
I am so sad. I do not know what to think. When I was diagnosed he is the
only child of my four that asked if it was hereditary, and I said no. He
replied Good, then I won't get it.
Now they strongly think he has it. I am so sad. So hurt - probably angry if
I allow that emotion. I worry about his future. I know he can be productive,
but really - two people in the same family having this beast of a disease?
What are the chances?
The only common denominator, other than the gene pool, is that he was in the
same vehicle accident that I was in 8 years ago. And he was on the same side
of the truck that I was on, in the back seat. Why so long to manifest? I
don't know. He has seen me and my trials, so he knows what is ahead.
Does anyone know if this beastly condition can be hereditary? He is already
talking about not having children in case it is.
I am so sad, so discouraged. I know that he is lucky - he can walk with a
cane - for that I am thankful. He has not gone to school for a year because of
the pain, and the exhaustion. I know that Tracy out there has an eleven year
old daughter with it. I am just wondering if anyone else has two family
members afflicted with this thing?
I simply cannot stop the tears. It is one thing for me, at 47, to face life
with this, but to have my son have it too, at 15 is almost too much.
Thanks for listening.
Janet
Re: [TMIC] just wondering
Jeff, This issue is addressed in some of the areas on the Transverse Myelitis Association Forum. From some of the information there I know that some have been able to use medications ie: Viagara etc. There is a man named Rick Hansen here in Canada. He is known as The Man in Motion. He is a paraplegic and about 25 years or so ago he wheelchaired around the world. I know that he also married and had a family. So I'm sure that there is help for men with these questions and issues. Have you discussed these questions with your doctor? Heather in Calgary - Original Message - From: jeff bernier To: msersl...@yahoogroups.com ; tmic-list@eskimo.com Sent: Thursday, May 06, 2010 4:12 PM Subject: [TMIC] just wondering im sure some on the list may find this offensive and to you i appologise,but i think it is a legitimate question,can somone with paraplegia still be able to achieve an erection or be able to experience ejaculation,again im not trying to offened anyone,but im looking for answers. DIPLOMACY DOES NOT WORK WHEN DEALING WITH NUT'S HELL BENT ON DESTROYING US.
Re: [TMIC] Honda Inovation
With my balance. I'd fall off this one. But it does look interesting. Heather in Calgary - Original Message - From: ladyno...@aol.com To: tmic-list@eskimo.com Sent: Monday, April 26, 2010 11:13 PM Subject: [TMIC] Honda Inovation Carry your portable scooter with you Have a Blessed Day, Naomi Finally! The solution to my immobility! How long is the waiting list?? Stupid thing will probably cost two or three hundred Gary your portable scooter with you Attached Message From: David Latham da...@lathamfamily.com To: Undisclosed-Recipient da...@lathamfamily.com Subject: Honda Inovation Date: Mon, 26 Apr 2010 12:10:10 -0400 Check out this nifty gadget. http://www.youtube.com/watch?v=cuIJRsAuCHQfeature=youtu.be
Re: Re: [TMIC] TMIC Neurontin--does it exhaust you?
Jill, How much amitryptilene are you going to take? Let us know how it works out for you. Heather in Calgary - Original Message - From: Jill Posner To: Pieter and Heather ; Todd Tarno ; TMIC Sent: Monday, April 26, 2010 10:04 AM Subject: Re: Re: [TMIC] TMIC Neurontin--does it exhaust you? Hi all, I am switching to amitryteline (sp?) from neurontin. I stopped the neurontin and started all at once (doctor's rec) and went nuts...this is when one can experience suicidal thoughts (really). I decided to wane the dose of neurontin (was on 1800 and now am taking half that for the week) and perhaps even a nother smaller dose next week. Amitryptilene is an older antidepressant that treats pain, especially in the neck I was told. I feel a bit like a yo-yo and sorry for me staff! In any case the foggy feeling is lessening already. I also hate TM--makes me long for my previous normal physicala and mental state. I wake up every morning and wait for the pain to ensue. But I can function which I am very grateful for. Jill -- From: Pieter and Heather pieterheat...@shaw.ca To: Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Mon, April 19, 2010 5:45:04 PM Subject: Re: Re: [TMIC] TMIC Neurontin--does it exhaust you? I too wish I could do Lyrica. Especially if it would leave me in less of a fog all day long. I hate TM. I really really hate this. Heather in Calgary - Original Message - From: Todd Tarno To: TMIC Sent: Monday, April 19, 2010 1:17 PM Subject: Fw: Re: [TMIC] TMIC Neurontin--does it exhaust you? Hey Jill everyone, My doctor told me to switch neurontin to Lyrica cold-turkey, because they where in the same family. I had the worst headache for 5 days and then I was fine. So I don't recommend doing like that, but it's faster. Why I like Lyrica for me, is that I only need to take it twice a day instead of 3 times a day. When I was on neurontin in the middle of the day, I would start to feel pain and then knew I had forgotten my second dose of neurontin. The neurontin would make me a little foggy and that might have been why I would forget the second dose. I wished we all could do well on Lyrica, Todd in CC, TX --- On Sat, 4/17/10, pjv1...@chartermi.net pjv1...@chartermi.net wrote: From: pjv1...@chartermi.net pjv1...@chartermi.net Subject: Re: [TMIC] TMIC Neurontin--does it exhaust you? To: Neil McNeil n_...@hotmail.com, Janice Nichols jan...@centurytel.net, tmic-list@eskimo.com, we4king...@verizon.net, Jill Posner posnerj...@yahoo.com Date: Saturday, April 17, 2010, 8:54 PM Jil, That much neurontin also exhausted me, but I took fewer naps as time went on.. It never eliminated TM pain, however, it helped some. My biggest complaint about Neurontin is the time it took to work and how fast it wore off. My Neuro said that was a common complaint and suggested I try Lyrica. I researched Lyrica for a year before letting my him write a prescription. My biggest fear was his insistence that I could switch from neurontin to Lyrica overnight. I finally made the switch exactly that way - overnight - with no side effects. I didn't swell up like a toad nor did I turn into one. Lyrica works within fifteen minutes of taking the pill and lasts much longer. I took 75mg every 12 hours for a year, then upped to 75mg every 8 hours for about 9 months. I then asked for an increase to 100mg every 8 hours and have been on this dosage for over a year. I understand being afraid of Lyrica, because I was petrified of it myself. Now I have to share the benefits I received. It works for some, but not for others. Patti - Michigan Jill Posner posnerj...@yahoo.com wrote: I am new to it...am on 2400mg a day--600 mg 4 times a day. It leaves me feeling like a zombie and doesn't really eliminate the pain. Lyrica is in the same family so I didn't think it made sense to wind down and up again. And it seems to have more side effects. I don't care to be as bloated as a toad. Are there other options? Jill
Re: [TMIC] Amytretaline (sp)
Regina, OMG.I didn't realize that Amytriptilene was actually Elavil. I too was put on that for a short while back in the 70's for depression. I too felt 'right out of it' or 'stoned'. I couldn't take it then and guess I will just stick with the Neurontin. Heather in Calgary - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Monday, April 26, 2010 10:34 AM Subject: [TMIC] Amytretaline (sp) Hi Jill, I took it years ago for depression and OMG, it was awful! The best way I can describe it is that I felt stoned. It was called Elavil then. In those days, they gave it to people in nursing homes to keep them quiet. But everyone reacts differently, so try it and let us know what happens, something good I hope. I take Neurontin but decided on my own to gradually decrease the dose, and eventually stop taking a medication that I believe bogus. So far, I see no difference in the pain and the darned TM symptoms. Good luck with the Elavil. R
Re: Re: [TMIC] TMIC Neurontin--does it exhaust you?
I too wish I could do Lyrica. Especially if it would leave me in less of a fog all day long. I hate TM. I really really hate this. Heather in Calgary - Original Message - From: Todd Tarno To: TMIC Sent: Monday, April 19, 2010 1:17 PM Subject: Fw: Re: [TMIC] TMIC Neurontin--does it exhaust you? Hey Jill everyone, My doctor told me to switch neurontin to Lyrica cold-turkey, because they where in the same family. I had the worst headache for 5 days and then I was fine. So I don't recommend doing like that, but it's faster. Why I like Lyrica for me, is that I only need to take it twice a day instead of 3 times a day. When I was on neurontin in the middle of the day, I would start to feel pain and then knew I had forgotten my second dose of neurontin. The neurontin would make me a little foggy and that might have been why I would forget the second dose. I wished we all could do well on Lyrica, Todd in CC, TX --- On Sat, 4/17/10, pjv1...@chartermi.net pjv1...@chartermi.net wrote: From: pjv1...@chartermi.net pjv1...@chartermi.net Subject: Re: [TMIC] TMIC Neurontin--does it exhaust you? To: Neil McNeil n_...@hotmail.com, Janice Nichols jan...@centurytel.net, tmic-list@eskimo.com, we4king...@verizon.net, Jill Posner posnerj...@yahoo.com Date: Saturday, April 17, 2010, 8:54 PM Jil, That much neurontin also exhausted me, but I took fewer naps as time went on.. It never eliminated TM pain, however, it helped some. My biggest complaint about Neurontin is the time it took to work and how fast it wore off. My Neuro said that was a common complaint and suggested I try Lyrica. I researched Lyrica for a year before letting my him write a prescription. My biggest fear was his insistence that I could switch from neurontin to Lyrica overnight. I finally made the switch exactly that way - overnight - with no side effects. I didn't swell up like a toad nor did I turn into one. Lyrica works within fifteen minutes of taking the pill and lasts much longer. I took 75mg every 12 hours for a year, then upped to 75mg every 8 hours for about 9 months. I then asked for an increase to 100mg every 8 hours and have been on this dosage for over a year. I understand being afraid of Lyrica, because I was petrified of it myself. Now I have to share the benefits I received. It works for some, but not for others. Patti - Michigan Jill Posner posnerj...@yahoo.com wrote: I am new to it...am on 2400mg a day--600 mg 4 times a day. It leaves me feeling like a zombie and doesn't really eliminate the pain. Lyrica is in the same family so I didn't think it made sense to wind down and up again. And it seems to have more side effects. I don't care to be as bloated as a toad. Are there other options? Jill
Re: [TMIC] TMIC Neurontin--does it exhaust you?
Hi Jill, I've had TM now since Sept 6, 2003. I was on 3200 mg of Neurontin (900 mg 4 times a day) for about the first 2 years. It, along with all the other meds wiped me out but my body learned to tolerate it after a some months. I then went down to 2400 mg a day -- 600 mg 4 times a day now for the past 4 1/2 years. Never eliminates the pain but makes it tolerable. I tried Lyrica but after the first 10 days my feet, ankles and calves were badly swollen and I felt like I was walking on rockers and could not get my shoes tied tightly. So the neuro put me back on Neurontin (actually Gabapentin for me). I found that the Lyrica made a difference in the pain but the side effects were not good for me. He told me that about 7% of patients have swelling side effects to the Lyrica. I also take 40 mg Baclofen/day (10 mg with each dose of Gabapentin) for the spasms. Then 4 mg of Zanaflex before bed. Heather in Calgary - Original Message - From: Jill Posner To: Janice Nichols ; Neil McNeil ; we4king...@verizon.net ; tmic-list@eskimo.com Sent: Saturday, April 17, 2010 4:23 PM Subject: [TMIC] TMIC Neurontin--does it exhaust you? I am new to it...am on 2400mg a day--600 mg 4 times a day. It leaves me feeling like a zombie and doesn't really eliminate the pain. Lyrica is in the same family so I didn't think it made sense to wind down and up again. And it seems to have more side effects. I don't care to be as bloated as a toad. Are there other options? Jill
Re: [TMIC] Children
Janice, I'm not sure about TM being passed on. However, there are a lot of autoimmune illnesses in my immediate family. I'm eldest of 3 girls (I'm going on 65). My father had rheumtoild arthritis. My sister 3 yrs younger has MS (was diagnosed in 1991 but figures she had it much longer) My sister 7 yrs younger was diagnosed with Ulcerative Colitis at age 19 and had large bowel and rectum removed then. My daughter has none of the above. However, this past year she signed up for extra medical insurance coverage and was denied MS coverage should she get it in the future. She had to include on her application any illnesses in her immediate family, mother, father, sibling. She had to declare that I have TM. So that tells me that insurance companies anyway figure there could be a connection. Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Sunday, March 21, 2010 6:29 AM Subject: [TMIC] Children Good Morning. It is the first day of SPRING! I have a question for you smarter than me TM'ers. In the future, do we have any information on chances for our children ending up with TM also? Janice
Re: [TMIC] OT Hospice
Kevin, My thoughts and prayers are with your Mom and you. I hope that bringing your mother home will help her. Heather in Calgary - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: Todd Tarno toddtm2...@sbcglobal.net; tmic-list@eskimo.com Sent: Tuesday, March 16, 2010 1:46 AM Subject: Re: [TMIC] OT Hospice We were told my Mom won't last 2 weeks if she continues refusing food and drink. Her stroke put her in a clinical depressaion. It's heartbreaking. Kevin Todd Tarno wrote: Hey Kevin, My heart dropped when I saw Hospice, but after reading your e-mail why you're getting Hospice, I think it's a great ideal. She will be closer to the things she loves, like you, her home and her music. You both really need this time together right now. Please keep us updated, Todd in CC, TX --- On *Tue, 3/16/10, Kevin Wolfthal /wolft...@optonline.net/* wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] OT Hospice To: tmic-list@eskimo.com tmic-list@eskimo.com Date: Tuesday, March 16, 2010, 9:01 PM Has anyone had hospice for a family member in the home? We want to try and bring my Mom home from the hospital with hospice and a 24 hour nurse. She is refusing to eat and we are hoping her being home will help comfort her. Kevin
Re: [TMIC] Re: Hope
I have a question. In the write up it says this young girl needs surgery. I'm wondering what type of surgery will help her. Also this statement doesn't make sense to me from the article She said if her daughter's condition remains untreated paralysis could become permanent and in a few cases transverse myelitis has been fatal, travelling to the upper body and paralysing the heart, lungs and other vital organs. I am wondering how it can now travel to the upper body and paralyze heart lungs etc if the original damage is already done? Am I reading this wrong? Just wondering is all. I'm sorry to hear of any child who has to join the ranks of us with TM. Heather in Calgary - Original Message - From: jrushton To: j ra ; tmic Sent: Friday, March 12, 2010 3:16 PM Subject: RE: [TMIC] Re: Hope Do they have Shriner's or have they called them because they will always help when it comes to a child. Also, St. Judes. Gosh, it would be wonderful if one of them would come thru for her!! Jeanne in Dayton, WA ---Original Message--- From: j ra Date: 3/12/2010 3:45:15 PM To: jan...@centurytel.net; j.d...@shaw.ca; Transverse Myelytis Subject: RE: [TMIC] Re: Hope Hi everyone, I have to ask a favour. This is a case that I'm personally getting involved with and I need some help. It's a pediatric case and I need some advice as to the best place for the child to receive care. Please read the article. FULL STORY Paralysed girl needs $1.9m for surgery Julien Neaves jnea...@trinidadexpress.com Monday, March 8th 2010 SERIOUS CONDITION: Christa Brumant at her home in Tunapuna last week. -Photo: ANISTO ALVES ON SEPTEMBER 19 last year then nine-year-old Christa Brumant awoke at about 6 a.m. with terrible abdominal pains and was taken to hospital. Five hours later Christa was paralysed from the waist down. 'She said 'mummy I can't walk',' her mother, Ramona Eligon, recalled. Christa spent 47 days at Mt Hope Paediatric Hospital where doctors diagnosed her with a condition called transverse myelitis, a rare neurological disorder caused by inflammation of a segment of the spinal cord. Her family is attempting to raise $1.9 million for medical treatment and rehabilitative therapy at the Johns Hopkins Hospital and the Kennedy Krieger Institute in Maryland, USA for May 4. When the Express visited their Tunapuna home last week, Christa, now 10, was sitting in the wheelchair that she has been confined to since September. She was checking out a Barbie Girls website and later raised her hands in triumph that she was a 'VIP' on the site. She was not in any visible pain during the interview. Eligon said her daughter has no feeling from the waist down but suffers from painful muscle spasms daily, at times so severe that she would stiffen and fall off the chair. Her other symptoms include daily headaches, back pain so severe that it keeps her awake for hours, nausea and acute bladder and bowel dysfunction. Eligon is extremely worried that her daughter is unable to defecate for days sometimes, which could lead to a build-up of toxins and further complicate her medical problems. She said if her daughter's condition remains untreated paralysis could become permanent and in a few cases transverse myelitis has been fatal, travelling to the upper body and paralysing the heart, lungs and other vital organs. The family has been able to raise $35,000 so far and has applied for the Health Ministry medical grant of US$10,000 for children requiring medical treatment abroad. The Education Ministry has provided a personal aide to assist Christa as she attends classes at Tunapuna Girls' RC, and her mother noted she is an 'A' pupil. Eligon has had to take leave from her job as an administrative assistant to help care for her daughter and was thankful for the support of her husband, Evris. To help raise funds the family is hosting a cruise on March 26 aboard the Treasure Queen and 'An Evening of Elegance' on May 1. For more information call 777-5080 or 395-5727. 'I really convinced that if everyone in the country opens their hearts and makes a small contribution not only my daughter can be helped but others needing assistance can be helped.' As the Express left the home, Christa wheeled herself outside, smiled and queenly waved good-bye.
Re: [TMIC] Lesions and Myelin Regeneration
Lynne, I think you meant to write that Jim Lubin is actually 'NOW' able to move a finger after being paralyzed for years. Your e-mail says 'not' instead of 'now'. I hate it when that happens and our fingers hit the wrong key. I do it all the time. However, in this instance it makes such a difference to the meaning you were getting across about Jim. I think he has had TM for 27 years now and just last year was able to move his left thumb on command. There is a video of it too. Heather in Calgary - Original Message - From: lynne myers To: tmic Sent: Thursday, March 11, 2010 5:44 AM Subject: Re: [TMIC] Lesions and Myelin Regeneration In my original post I did not state that there would be no imporvement after the two year mark. With TM most of the improvements take place in the first two years. After that any improvement is slower and less noticable. I would not want anyone to give up hope. Our TM website founder Jim Lubin is actually not able to move a finger after being paralized for years. --- On Wed, 3/10/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Lesions and Myelin Regeneration To: Robert Pall rp...@neillsupply.com, Jan Hargrove jmh1...@sbcglobal.net, lynne myers lynnemye...@yahoo.com, tmic tmic-list@eskimo.com Date: Wednesday, March 10, 2010, 9:33 PM Wasn't going to chime in any more on this subject, but Rob, you really have nailed the mindset we all need to have to continue to live our lives and show improvement.Without it, we are lost to this #!*%# disease! Janice From: Robert Pall Sent: Wednesday, March 10, 2010 10:19 AM To: Jan Hargrove ; lynne myers ; tmic Subject: RE: [TMIC] Lesions and Myelin Regeneration As someone who has had TM for close to 13 years I thought I too would chime in on the subject. After 12 years I had a new MRI performed which showed the lesion exactly as it appeared initially (first spotted in my 3rd MRI at the onset). While the vast majority of my improvement took place in year one I would agree with Jan that improvement even though small has continued the past 12 years. I walk,drive and exercise more efficiently than I ever could. I have found it vital to maintain an exercise regimen in order to not let the rest of my health go downhill. I swim 3-4 times a week, watch my diet (helps my bowel problems), have Activa every night...it really works! I beseech all of you to not give up...I no longer am waiting for the cure that will make me the way I wasI was 50 when TM hit me and I doubt a cure is in my future. That being said I do take meds,presently the meds I take for TM include Lyrica,Cymbata and diazapan. These meds have reduced the banding,pins and needle and numbness. At this point I only see my Neuro once a year (presently Dr. Kerr) and I do this to insure myself that I am on the cutting edge regarding pain management. I try to live life to its fullest and have never let my condition define who I am. I expect to get a little better every day I have left to live...this is my mindset and how I deal with something so difficult to deal with...let alone try to explain it to someone who has never encountered anyone with our rare condition. Rob in New Jersey -- From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Wednesday, March 10, 2010 10:51 AM To: lynne myers; tmic Subject: Re: [TMIC] Lesions and Myelin Regeneration I do not agree with the two year statement. My doctor never told me that I wouldn't get well, nor give me a timeline. The only thing he said would not return was my temperature control. He was right!! AND, I've had improvements throughout the 14 years tm's been in my lifeno matter how small, improvement is improvement and gives hope for more to come!! My 2¢janh -- From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wed, March 10, 2010 6:26:13 AM Subject: [TMIC] Lesions and Myelin Regeneration This is a quote from one of the message forum pages on TM website: Even though the lesion(s) are gone, there may be underlying nerve damage caused by the inflammation and the fact that the nerves were unprotected once the myelin got eaten away. The myelin grows back at 1mm a day, so it takes a while for the body to repair itself, BUT the nerve can remain damaged. You will know what damage is left at the 2 yr mark. After this you can still have some recovery but it
Re: [TMIC] TM and cooking
My hubby is Boss of the Barbecue here in Calgary. We also can barbecue year round even when it snows. Our barbecue is on the basement 'walk-out' patio so is undercover. Of course we don't use it when the temps are below about minus 10 or minus 15 Celcius. It can take a little bit longer as you have to keep the barbecue temp up. It is a nice break from 'comfort food' cooked in the house all winter to have a barbecued hamburger, steak or pork chop etc in the middle of winter. :) Heather in Calgary - Original Message - From: Barbara Alma To: elbobber...@earthlink.net ; tmic-list@eskimo.com Sent: Monday, February 15, 2010 1:39 AM Subject: Re: [TMIC] TM and cooking We also grill a lot, and our son Daniel and his family live with us right now and when he isn't in class, working or having too much homework, he is great at helping with cooking or grilling. I try to get him to take over 2 nights or more a week, but getting increasingly more difficult with his new schedule. He makes such a huge deal out of meat prep and cooking though that he can hardly manage to get a whole meal done. Mind you he's a great cook, nearly chef quality in some things that he prepares. I don't grill much myself since we have a 4 foot stainless steel grill and raising and then lowering the lid is very cumbersome for me and I get tired of asking for help. It's wonderful though as we can cook a party load of meat and tons of corn at the same time. Daniel has smoked a salmon that he caught on it too. Both of our boys are very good cooks, much better than their wives, so they really don't do much cooking since the guys do it much better. And the boys take over when there's a party or family function going on, and that works for all of us. I make a couple of dishes and they take care of the rest. I taught them young, that if they were going to want to eat well, they needed to be able to cook well. It's much easier on the wallet and healthier to know what's in your food. Living in California we can grill year round, and even do it sometimes in the rain, and long as it's not pouring too hard. But some things you just need to cook inside the house. Hugs, Barbara A in Auburn CA -Original Message- From: bobby jim elbobber...@earthlink.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 5:54 pm Subject: Re: [TMIC] TM and Pilates Me missus too, being the foodie that she is, sometimes cooks to exhaustion, specially when it's our turn to host the semi-monthly birthday(s) party, those being where we bunch up several bee-dayze in close proximity and have one party for them all. Plus there's also Thnxgvng and Xmas; luckily, her immediate family is only about from 10 to 12 (some can't come, etc..), so her turn to host is every three or four. My family is scattered all over 2 continents so I see them every now and then. Happy Valentine's Day to all y'all. BobbyJim From: Barbara Alma To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 6:20 Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get
Re: [TMIC] Yooo...hooo....TMIC Members, where are you?
Lynne, Living in Calgary we get Chinooks and they can put the air pressure up and down like a yo-yo. A lot of people get migraines when Chinooks hit (I used to too). Yes, cold and rainy and cold and snow are bad for me. I like temps about plus 22 or plus 23 Celcius and that is fine. We are very dry here so no humidity to really speak of. Heather in Calgary - Original Message - From: Janice Nichols To: lynne myers ; tmic Sent: Wednesday, February 03, 2010 4:03 PM Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? Lynne, your weather choice to live is to hot for me.Was in Phoenix once during late spring - it was fine then, but you could tell it was heading hot.No for me. Janice From: lynne myers Sent: Wednesday, February 03, 2010 7:13 AM To: tmic Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? Three types of weather are bad for me. Cold rainy weather is the worst, even the day before the rain starts. Hot humid days are next on my list. Then the cold. So in Michigan that leaves me a couple of months out of the year that aren't any of the above. Heather I agree about the changes in the air pressure because when the weather changes I want to do nothing more than go to bed and not move. Lynne In Arizona where the weather is GREAT! There is none so amazing as God Peggy Wilson In a message dated 2/1/2010 8:06:14 P.M. US Mountain Standard Time, pieterheat...@shaw.ca writes: the weather sure makes a difference with me. Cold even if I'm not out in it makes me stiffen up. Sometimes I think the air pressure also contributes to our misery. Heather in Calgary - Original Message - From: Janice Nichols To: Robert Pall ; kevin weilacher ; Grace M. ; tmic-list@eskimo.com Sent: Monday, February 01, 2010 6:50 PM Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? I will let you know this spring what difference there is in my legs.I honestly don't think the weather has much to do with the problem. I will pay more attention to it after reading all of your comments. Janice
Re: [TMIC] Yooo...hooo....TMIC Members, where are you?
the weather sure makes a difference with me. Cold even if I'm not out in it makes me stiffen up. Sometimes I think the air pressure also contributes to our misery. Heather in Calgary - Original Message - From: Janice Nichols To: Robert Pall ; kevin weilacher ; Grace M. ; tmic-list@eskimo.com Sent: Monday, February 01, 2010 6:50 PM Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? I will let you know this spring what difference there is in my legs.I honestly don't think the weather has much to do with the problem. I will pay more attention to it after reading all of your comments. Janice From: Robert Pall Sent: Monday, February 01, 2010 9:22 AM To: kevin weilacher ; Grace M. ; tmic-list@eskimo.com Subject: RE: [TMIC] Yooo...hoooTMIC Members, where are you? I was out walking yesterday in New Jersey with my wife when I realized how much stiffer my legs were. I attributed this to the cold (20 degrees). Im tired very quickly. In my case the 2 things that seem to effect my legs the worst (the banding) is very cold weather (Florida here I come) and very humid or rainy weather. Generally speaking I feel better and stronger in the spring and summer! Rob in New Jersey -- From: kevin weilacher [mailto:hwyfli...@yahoo.com] Sent: Monday, February 01, 2010 9:43 AM To: Grace M.; tmic-list@eskimo.com Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? Hey Gracie and everyone... I've read through the posts.. I'm here...I don't post here often...too busy with my other projects usually or actually, my distracted attention span takes me in 5 different directions that I forget to post anything. As far as the weather/pain/cold/rain etc.living in Northeast Ohio certainly has given me some challenges with the cold in the winter time...the pain is a mummer bugger most times and in the summer the heat and humidity make me nuts. If I go outside and try to do any kind of activity, I fatigue and get exhausted in no time at all...plus, I start sweating and now with my TM, the only part of me that sweats anymore is my head. It sweats profusely If I had a choice at this point, I would be living somewhere near a place called Alamogordo NM. It is a small town in New Mexico and I lived there for three years back in the 80's when I was in the Air Force. That area has the most perfect weather in my eyes of any place that I've ever been. Average annual high temp of 76 degrees, average annual low temp of 47 degrees, 11 inches total precipitation per year and 4 inches of snow per year. Humidity averages only about 50% year around and also about 80% days of sunshine a year. The elevation is about 4,000 feet and within a 20 minute drive you can go into the mountains and be over 9,000 feet and have all the snow you want and it is 20 degrees cooler. Plus---I love southwest style food...not mexican, but southwest, there is a difference. It's a combination of American Indian, Mexican and Spanish. One of these days.. Kevin Weilacher N.E. Ohio (Canton) -- From: Grace M. grace...@gmail.com To: tmic-list@eskimo.com Sent: Sun, January 31, 2010 7:02:39 PM Subject: [TMIC] Yooo...hoooTMIC Members, where are you? Where is everyone? The last msg that I got was from Frank, looking for pie recipes. Anyone out there?
Re: [TMIC] Age
lOL - Original Message - From: Roger Pratt To: Pieter and Heather ; Jan Hargrove ; Todd Tarno ; tmic-list Sent: Saturday, December 12, 2009 9:29 AM Subject: Re: [TMIC] Age You're right. I was really 44, I guess I'm just trying to think that I haven't had it so long ( or maybe old age is really setting in. LOL) Roger, in Kennewick, WA - Original Message - From: Pieter and Heather To: Roger Pratt ; Jan Hargrove ; Todd Tarno ; tmic-list Sent: Friday, December 11, 2009 8:12 PM Subject: Re: [TMIC] Age Roger, I love your way of doing math.LOL Heather in Calgary - Original Message - From: Roger Pratt To: Jan Hargrove ; Todd Tarno ; tmic-list Sent: Friday, December 11, 2009 2:08 PM Subject: Re: [TMIC] Age I was 54 back in 1994. I'm now about 60 (23rd of Dec.) so TM has been with me over 15 years. k Roger, in Kennewick, WA - Original Message - From: Jan Hargrove To: Todd Tarno ; tmic-list Sent: Friday, December 11, 2009 12:25 PM Subject: Re: [TMIC] Age Todd caught an errorI'm not sure (without scrunching numbers), how old I would have to be if I was 57 when tm came to live with in 1966, I meant April, 1996 Double digits, just the wrong ones... Thanks for catching my error, Todd. I do think there have been people on here who were diagnosed before '66, but I can't remember who.maybe Larry Throne from OKI know he was struck early in life. Of course, if he wasn't even born by '66, my name will be MUD!! janh, whose computer had a senior moment!! From: Todd Tarno toddtm2...@sbcglobal.net To: Jan Hargrove jmh1...@sbcglobal.net Sent: Fri, December 11, 2009 2:15:30 PM Subject: Re: [TMIC] Age April, 20 1966, I would had only been 2 years old. Did they even know what TM was at that time? Todd in CC, TX --- On Fri, 12/11/09, Jan Hargrove jmh1...@sbcglobal.net wrote: From: Jan Hargrove jmh1...@sbcglobal.net Subject: Re: [TMIC] Age To: Janice Nichols jan...@centurytel.net, tmic-list@eskimo.com Date: Friday, December 11, 2009, 2:05 PM I was 57 by one month when tm came to live with usApril, 1966 janh Stillwater, OK From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thu, December 10, 2009 11:35:27 PM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond?I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
Re: [TMIC] Age
I was 58 yrs old (now I'm 64) Janice you might want to also check the regular message board on the Forum. There are a couple of places there that ask about peoples ages. \\ Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Thursday, December 10, 2009 10:35 PM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
Re: [TMIC] News about Dr Kerr and the TM Centers
Jim, Thank you for this explanation. Heather in Calgary - Original Message - From: Jim Lubin To: tmiC-LIST@eskimo.com Sent: Sunday, December 06, 2009 12:07 PM Subject: [TMIC] News about Dr Kerr and the TM Centers Dr. Douglas Kerr, the founder of the first center focused on clinical management and research of transverse myelitis (TM), will be leaving Johns Hopkins for a position at a biotech company in the Boston area, where he hopes to advance the development of therapies for neurologic disorders, including multiple sclerosis (MS) and TM. Dr. Kerr will continue to serve on the Medical Advisory Board of The Transverse Myelitis Association and he will likely begin seeing patients in the Boston area in mid 2010. Dr. Kerr will also continue to be involved with the Johns Hopkins Project RESTORE, as well as collaborate with the TM and NMO Center at the University of Texas Southwestern, headed by Dr. Benjamin Greenberg. The stem cell research project for TM and MS, the high dose cyclophosphamide treatment program in MS and the functional electrical stimulation clinical trial for secondary progressive MS will all continue at the Johns Hopkins Project RESTORE. The Johns Hopkins TM Center that was established by Dr. Douglas Kerr at Johns Hopkins will continue to be a focus for research on this disorder and will provide clinical care to both children and adults with TM. Dr. Carlos Pardo will become the new Director of the Johns Hopkins TM Center. Dr. Pardo has been a clinician and researcher at the TM Center since its inception. Dr. Pardo has provided exceptional care to people with TM and has been very active in the TMA community, including as a regular participant in our symposia and as a researcher with Project RESTORE. Along with Dr. Pardo, Dr. Michael Levy will continue his effort focusing on the clinical and research studies on the recurrent forms of these rare neuroimmunologic disorders, such as recurrent TM, recurrent optic neuritis (ON) and longitudinally extensive TM. Dr. Levy also established the NMO Clinic as part of the TM Center at Johns Hopkins in 2009. Dr. Daniel Becker, a neurologist at the Kennedy Krieger Institute who has been caring for children and adults with transverse myelitis, ADEM and NMO at the International Center for Spinal Cord Injury, will continue a very close collaboration with the JH-TM Center with his expertise in neurorehabilitation. Dr. Julius Birnbaum, a neurologist and expert on rheumatological disorders will continue his practice at the JH-TM Center with special clinical and research focus on the underlying rheumatic conditions associated with TM. The Johns Hopkins TM Center in Baltimore (Maryland) and the newly established TM and NMO Center at the University of Texas Southwestern in Dallas (Texas) will become the axis of a network of TM Centers around the country for facilitating the care and research on TM. Jim Lubin Director, Information Technology/Webmaster Transverse Myelitis Association jlu...@myelitis.org http://www.myelitis.org http://www.myelitis.org/HowToHelp Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain information that is privileged, confidential and/or exempt from disclosure under applicable law. If you have received this communication in error, please immediately contact the sender and destroy the material in its entirety. Thank you.
Re: [TMIC] OT Good news!
Kevin, That is wonderful news. I'm so glad she was everything you said. I hope it will continue to be positive for you and your Mom. Heather in Calgary - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Saturday, December 05, 2009 2:04 PM Subject: [TMIC] OT Good news! Well, I think the powers that be finally gave my Mom and me a break. I hired someone from Companions and Homemakers, and she just finished. She is WONDERFUL! Efficient, friendly, kind, and just a lovely person. She's coming back tomorrow and I hope this isn't too good to be true. Just when you give up hope in humanity.. Kevin
Re: [TMIC] Back on!!!
It certainly isn't here in Calgary these last 2 days. We had a real old fashioned blizzard yesterday with tons of snow and high winds. The temp right now is plus 10 F and predicting overnight lows later this week of minus 15 F. I'm staying in. Police warned to stay off the roads today as it was still blowing snow and roads still in bad shape in and around the city and province. Brr. I'll take the Florida weather temps today. Heather in Calgary - Original Message - From: Jill Z To: tmic-list ; CANDIS KALLEY Sent: Saturday, December 05, 2009 3:37 PM Subject: Re: [TMIC] Back on!!! I think the weather you're looking for is in Fijilol --- On Sat, 12/5/09, CANDIS KALLEY cakal...@embarqmail.com wrote: From: CANDIS KALLEY cakal...@embarqmail.com Subject: Re: [TMIC] Back on!!! To: tmic-list tmic-list@eskimo.com Date: Saturday, December 5, 2009, 4:25 PM Mary, Welcome back! You and Jan have 10 years on me - my anniversary is coming up 1/5/06 for the first attack and 1/30/06 for the second attack. I'm in SW FL and can relate to being too hot - Mid June to Mid Sept here is REALLY bad - then we get a week or 10 days in Dec. or Jan. that's too cold for me. I'd prefer to be somewhere where its 75 - 78 degrees with 50% or less, humitidy year round BUT don't know of any such place. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Jan Hargrove jmh1...@sbcglobal.net To: Mary mew1...@gmail.com, tmic-list tmic-list@eskimo.com Sent: Saturday, December 5, 2009 1:17:14 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] Back on!!! WELCOME BACK!! You and I were both gifted with tm in '96.. janh Stillwater, OK -- From: Mary mew1...@gmail.com To: tmic-list@eskimo.com Sent: Fri, December 4, 2009 8:13:18 PM Subject: [TMIC] Back on!!! Hello to all of you. I have been off and on here since 1997mostly off I guess! Just got a new computer. Mine has been down for about a year or more. My name is Mary Woods and I've had TM since 12/2/96.T-6. I am mobile but with a limp, incontinence, memory and cognitive problems. I formerly lived in Auburn Ca, (too hot) but moved to the coast of No. Calif and it's about 30 degrees cooler here. I've been reading your e-mails for about 2 weeks and decided to join in. Lots of the same people and many new ones. Welcome!! More later Mary
Re: [TMIC] Dr Kerr
I wonder then if he will still be working with the Transverse Myelitis Association? Heather in Calgary - Original Message - From: Laurie Zissimos To: tmic-list@eskimo.com ; lziss...@aol.com Sent: Friday, December 04, 2009 8:11 AM Subject: [TMIC] Dr Kerr This week I learned that Dr Douglas Kerr will be leaving Johns Hopkins in January and relocating to Boston. I do not know the details other than he will be seeing new patients beginning in mid-2010 at Harvard. Based on the recent announcement by NIH and the fact that 11 of the 13 embryonic stem cell lines approved by NIH came from Boston Children's Hospital, that he will have a better opportunity for research and treatment thru this new venue. I will miss him dearly and hope to travel to Boston one day to see him again as we all get closer to a cure for TM, MS or any other spinal cord injury that can benefit from stem cell therapy.
Re: [TMIC] RE: Device helps woman walk
Thanks Todd Heather - Original Message - From: Todd Tarno To: TMIC Sent: Friday, November 27, 2009 2:12 PM Subject: Re: [TMIC] RE: Device helps woman walk www.WalkAide.com --- On Fri, 11/27/09, Pieter and Heather pieterheat...@shaw.ca wrote: From: Pieter and Heather pieterheat...@shaw.ca Subject: Re: [TMIC] RE: Device helps woman walk To: Gary Thomas gbthomas8...@sbcglobal.net, tmic-list@eskimo.com Date: Friday, November 27, 2009, 12:59 AM Gary, The clinical trial is for 3 years. I get to keep it after that time. The full price of it would be between $4500. and $5000. if not on the trial. That is the going rate for it in Canada and the USA The additional costs that are not covered are for the electrodes. These need to be replaced every 10 days to 2 weeks. Here they cost $25. for a a pkg which holds two sets so they do me for almost a month. Then it also requires a AA battery which I replace about every 6 weeks. It has really helped me. If you would like to research it a bit more then just put the word 'WalkAide' into Google. Heather in Calgary - Original Message - From: Gary Thomas To: Pieter and Heather ; tmic-list@eskimo.com Sent: Thursday, November 26, 2009 6:57 PM Subject: Re: [TMIC] RE: Device helps woman walk Heather, It was interesting to read about your use of the WalkAide since I did not know, when I put that article on the list this morning, that anyone I had heard of, with TM, was using it. Thanks for writing and I hope all goes well. By clinical trial, is there a time limit, or do get to keep the device? Is there additional costs? Just curious. Fortunately, at this point I am not in need of such a device. Gary in Michigan. - Original Message - From: Pieter and Heather To: tmic-list@eskimo.com Sent: Thursday, November 26, 2009 8:47 PM Subject: [TMIC] RE: Device helps woman walk I have not sent message to the list for a long time. However do read the digest every day. I too use the 'WalkAide' and have since May of 2008. It has really helped me with the drop-foot. I am in a clinical trial for it here in Alberta which is wonderful for me as the cost is very high but I did not have to pay more than $500. The only thing is that not every person is able to use it. The clinic needed to establish that the peroneal nerve is still intact or still working properly. If it isn't then the device won't work for you. It has been amazing to use it and my leg is much much less tired. I no longer need cortizone shots in my hip every 6 months due to the pain from twisting my leg to the outside and dragging the leg with the 'foot-drop' I feel so very fortunate to be in this trial and that this has worked for me. Heather in Calgary
Re: [TMIC] RE: wow, you work too hard Trudy
Linda, I'm 5 1/2 yrs now and still cannot look up at the stars without holding onto something or someone. Crazy isn't it? But hey, that's TM for you. Heather in Calgary - Original Message - From: L T CHERPESKI To: Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com ; Janice ; Pieter and Heather Sent: Friday, May 01, 2009 10:20 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Heather, I haven't given up yet, but I still can't look up at the stars without almost tipping over. Maybe it will happen one of these nights when I least expect it. That would be wonderful. hugs, Linda (Eagle, ID) - Original Message - From: Pieter and Heather To: L T CHERPESKI ; Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com ; Janice Sent: Friday, May 01, 2009 9:58 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Linda, I know what you mean about shutting your eyes in the shower. It was well after the 2 yr mark that one day I got out of the shower and it hit me. I had shut my eyes to wash my hair and I didn't have to touch the wall. From time to time I still just touch the shower wall or glass door with my elbow but not like I did for the first few years. (I'm at 5 1/2 yrs now). So yes I guess little things improve from time to time. Heather in Calgary - Original Message - From: L T CHERPESKI To: Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com ; Janice Sent: Friday, May 01, 2009 9:33 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Janice, you're so funny. The more questions, the better. Then we all learn something. About the cathing, I have had TM for 7 years now and have had to cath from the beginning. I couldn't feel that I had to go so I needed to put myself on a pee schedule Then my doctor sent me to a urologist who worked with people with neurological issues. She was great - after some testing (just a tad bit embarrassing) she diagnosed me with neurogenic bladder. In my case, I could not empty my bladder completely. However, I had a very strange thing happen about 2 months ago. I had just finished another round of Rituxan infusions and one day realized that I hadn't cathed! Miracle of all miracles. I still cath before bed just to make sure I don't need to get up in the night. I really have stopped thinking there is a time limit on this TM stuff. I've seen small improvements in the last few years that really surprised me. Like washing my hair in the shower and being able to close my eyes without one hand on the glass door. Sometimes I still need to hang on or I will lose my balance, but I could NEVER close my eyes before. Some of these things may seem small, but when you could not do it for years, it's actually huge. I hope you and all the rest of us will continue to improve for many years to come. Oh, just one more thing - Janice, nothing is too embarrassing to talk about here! We've either been there ourselves or know someone who has. So go for it! hugs, Linda (Eagle, ID) - Original Message - From: Janice To: Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 6:49 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy This is Janice, As usual, I have another question. How many of you have to cath? Do you know if that is from having a catheter in too long when in the hospital, or is it a result of paralyzation onset taking a long time to come back? Do you still feel improvement - cathing less, fewer wet pants/pads, more control? Do you wake up in the nite to an already wet bed - you don't yet feel when you are peeing until it is too late? I have not gotten control yet after almost 2 1/2 years. I am improving, but not there yet. Wonder if it will ever heal. Just wondered if those of you that have had TM longer have seen any improvement after the 2-year mark. Thanks for any responses I get.I realize this is personal. Janice - Original Message - From: Trudy OGILVIE To: balmat...@aol.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 3:27 PM Subject: [TMIC] RE: wow, you work too hard Trudy Hi Barbara, Congrats on having 3 good nights of sleep! I'll bet you feel like a whole new person.. I really don't work so hard, I do pace myself and if it doesn't get done it doesn't get done. I do have someone come in every other week to help me so I'm fortunate for that. My washing machine broke and I am now trying to catch up on that disaster. My husband (Mac) is fantastic to me. It's odd in that seven yrs. ago when this hit we were having some difficulties that all changed when TM came
Re: [TMIC] RE: wow, you work too hard Trudy
AOL EmailWhew, glad I'm not alone in this either. I carry extra underwear in my purse all the time. Have needed it from time to time too. Always wear protection too but sometimes need to change anyway. I also fall asleep in the bathroom in the middle of the night. Other times I wake up in bed, uncover and then don't get up. I wake up later and wonder why I'm so doggone cold. Realize that I'm all uncovered and figure out that 'oh yes, I WAS getting up' but guess I didn't quite make it. That is why I wear Depends to bed. Also saves having to wash the floor down the hallway to the bathroom in the mornings. Don't we all just have the most fun stories that we share with our TM family that we for the most part will never meet in person. Certainly not like the prim and proper days of our grandparents or ancestors prior to them. Heather in Calgary. - Original Message - From: Trudy OGILVIE To: heyjude48...@aol.com ; tmic-list@eskimo.com Sent: Saturday, May 02, 2009 7:27 AM Subject: RE: [TMIC] RE: wow, you work too hard Trudy Can't imagine being without this group Jude ... we definitely share a close-knit bond.even discussing our most embarrassing moments... I can't tell you how many times I didn't quite make it to the restroom so I always had an extra pair of clothes in my car... there was that time at school (I taught computer in an elementary school. Well I didn't make it... There I was in the hallway standing AGAINST the wall waiting for the kids to go by. When I got back to the lab I told the tech I worked with that I fell in the camode.. I am rather thin so they believed me home I went. After that I always kept a change in my desk. Another time I sat at my desk for what seemed like hours waiting for some teachers to get out of room so I could go in the Tech closet and change. I finally went the depends route. Now I take sanctura and it does a good job for me. Tho I think there was article that some incontinence drugs cause memory loss. just what I need to hear I'll be 63 next week... and I've always blamed my memory loss and my four kids!! Love ya Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths. -- From: heyjude48...@aol.com Date: Fri, 1 May 2009 22:50:44 -0400 Subject: Re: [TMIC] RE: wow, you work too hard Trudy To: mother...@msn.com; TMIC-list@eskimo.com You are so funny, Trudy...we do have our own vocabulary regarding TM...kind of like twins do. I love you, Jude In a message dated 5/1/2009 4:27:49 P.M. Eastern Daylight Time, mother...@msn.com writes: Crazy I know. so is this damn TM .. only those of you on this list can understand words like banding, numbness, fire and ice. change your shoes . watch out... change your clothes . watch out.. -- Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! -- Hotmail® goes with you. Get it on your BlackBerry or iPhone.
Re: [TMIC] difficulties
Very well said, very well said. Heather in Calgary - Original Message - From: Westgold To: tmic-list@eskimo.com Sent: Saturday, May 02, 2009 4:46 PM Subject: [TMIC] difficulties Difficulties Difficult challenges can come into your life when you least expect them, and when you can ill afford them. Yet there they are, bullying their way into your world. If you try to ignore them or deny them, they just get bigger and more problematic. The more you let them worry you and get you down, the more helpless they make you. A life full of challenge is often stressful and uncomfortable, but it is vastly better than the alternative, which is a life full of nothing. Your own particular challenges may seem extremely unfair, and they probably are. But that doesn't make them any less real, nor does it make you any less obligated to confront and endure them. Accept the challenges when they appear, and you're well on the way to overcoming them. Though they bring disruption and pain, they also bring growth and power. Sometimes what is best for us, is not what we would choose. Life is difficult and in it we find unimaginable joy. Accept it all and live it for all it's worth.
Re: [TMIC] RE: tmic-digest Digest V2009 #373
Wow Robert. You were very fortunate to have survived. I have not heard of a Greenfield Filter. My sister-in-law has been having little mini-strokes or TIA's. I will be seeing her soon so will mention this to her. I'm sure all in the medical field know about this but i have not heard of it before. Heather in Calgary - Original Message - From: Robert Pall To: marieke dufresne ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 7:57 AM Subject: RE: [TMIC] RE: tmic-digest Digest V2009 #373 When I first came down with TM 11+ years ago after I was in rehab for about a week I developed a clot behind my right knee...they put me on Comidan and another blood thinner that they injected into my stomachnone of this helped as the clot broke and part of it went to my lungs and caused a pulmonary embolism (pain beyond belief)...the Drs said I only had a 50/50 chance of not dyingwhat saved me was the size of the clot and the fact that it went to my lungs instead of my heart or brain which would certainly have killed me. In order to prevent another clot from occuring I had the Greenfield Filter inserted near my groin. This filter does not prevent clots...but it does not allow a clot to go above your waist...effectivley making blood clots non life threatening. Rob in New Jersey -- From: marieke dufresne [mailto:marieke...@hotmail.com] Sent: Friday, May 01, 2009 9:38 AM To: tmic-list@eskimo.com Subject: [TMIC] RE: tmic-digest Digest V2009 #373 RE: DVT, are Deep Vein Thrombosis. Basically, CLOTS in the vein that block it and can also break away and travel up in your blood stream. Very dangerous as it can go to your lungs or heart or brain and this can kill you. When you get DVT they put you on blood thinners to get rid of them and then usually you have to take another type to decrease the chance of getting more. People who do not move around much/are paralyzed tend to get them. It is important to try to move around as much as possible. If you can flex your ankle do it every hour to keep the blood moving so that it is not in stasis. You can also wear TED stockings during the day, these help as well. Keeping your feet elevated too. You'll know if you have one, there will be pain, redness, swelling in the area it is situated in. You may also see a large bruise. People who fly long distances and don't get up to walk around are also prone to getting one. Marieke RN TM @T1 since March 2004 --Forwarded Message Attachment-- Date: Thu, 30 Apr 2009 21:07:25 -0500 From: jan...@centurytel.net To: mother...@msn.com; tmic-list@eskimo.com; balmat...@aol.com Subject: Re: [TMIC] wow, you work too hard Trudy Barbara, Your situation seems to be the closest to my situation that I have read yet. I am referring to your paragraph 2.Also, use baclofen (2 at dinner, 1 at 8:00pm) and have no problem sleeping too. What would we do without really good husbands!?!. You mentioned DVT's in your legs. What are those? Are they painful? I have never heard of that.Janice -- Help keep personal info safe. Get Internet Explorer 8 today!
Re: [TMIC] Enough sleep and husbands
Cheryl, Two years prior to TM I had 'bladder repair surgery' because of incontinence when sneezing, laughing, walking too fast etc. At least I had 2 years where I was safe from that problem. After TM I now again have the problem which no surgery will help. Kind of ironic I guess. However, I do wonder if having the surgery in 2001, two years prior to TM has helped me not have too many problems except at night. Heather in Calgary - Original Message - From: rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Friday, May 01, 2009 7:27 AM Subject: [TMIC] Enough sleep and husbands Hi Everyone, I have not slept more than 4 hrs straight in over 30 years!Usually manage about 3 hrs. Before tm,I had bladder issues,and was up several times a night (or day,when I worked the 7p-7:30a shift).Then after tm,I had incontinence problems while paralyzed and in rehab.That passed,and I only have to run to the bathroom if I drink caffeinated beverages. Many of you praise your husbands. My ex husband (divorced in 1985 after 22 yrs and 10 yrs before tm hit me) mows my lawn,trims bushes,trees,rakes leaves,cleans the gutters in the fall and gets rid of the snow in winter.All without me ever asking him to do it! We get along better now than we ever did before.Probably because we don't live together :). Best wishes to all, Cheryl in Easthampton,Mass.
Re: [TMIC] wow, you work too hard Trudy
Janice, No, it doesn't. I do find that the Zanaflex though has helped to relax me and I get a better sleep. Apparently for me it relaxes the bladder and I get to sleep. At least that is how I understand it. I actually don't mind getting up once or twice in the night. It is the only time I move when sleeping. I go to sleep on my one side. I never move. Then my body somehow wakes me. Sometimes with muscle spasms in my legs. I then get up, go to the bathroom, get back to bed and lay on the opposite side. After another 3 or 4 and once in a while 5 hours I get up again. Since I have been taking the Zanaflex I feel I get a longer sleep. I was told though that the Zanaflex (at 4 mg for me) effect only last for about 2 hours. HOwever, that is enough time for me to fall asleep and I get to relax then. Heather - Original Message - From: Janice To: Pieter and Heather ; balmat...@aol.com ; mother...@msn.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 6:35 PM Subject: Re: [TMIC] wow, you work too hard Trudy Heather, Does Baclofen make you have to go the bathroom a lot?Janice - Original Message - From: Pieter and Heather To: balmat...@aol.com ; mother...@msn.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 12:49 AM Subject: Re: [TMIC] wow, you work too hard Trudy Barbara, Has your doctor ever suggested or have you ever tried Zanaflex? It is also a muscle relaxant. I take 40 mg of Baclofen in 4 divided doses throughout the day and one of the doses is at bedtime. However, I also take a 4mg tablet of Zanaflex right before bed. I find that I do not have to get up to the bathroom every 2 hours during the night. Now I am able to go 4 or and sometimes 5 hours at a time during the night. That happened when I started the Zanaflex. Makes a big difference when we get a pretty good night sleep. I know that some other people on the list take more Zanaflex than that but for me it works. Heather in Calgary - Original Message - From: balmat...@aol.com To: mother...@msn.com ; tmic-list@eskimo.com Sent: Thursday, April 30, 2009 3:00 PM Subject: [TMIC] wow, you work too hard Trudy Hi Trudy, You work too hard, I could not clean all day, whether I wanted to or not. If not for a automatic washer/dryer, the wash would not get done. And, if it goes for floors, I can do a small amount but not a lot. It kills my back, and I'm in bed for days. So, it's someone else's job. I do clean the spots on the kitchen floor iwth paper towels though from time to time, since hubby or daughter in-law aren't really responsive on the job, lol. It doesn't seem to be as important to them that it is and looks clean as it is to me. My speed is dusting and cleaning kitchen/bathrooms and laundry. I can do most things that are off the floor and I cannot do too much in a day and still manage to cook dinner. I don't cook dinner everyday, but try to do it most days. Pete (hubby) usually handles breakfast most days and it's a nice trade off as he loves breakfast. That's one of the good parts of his retirement. He also makes my coffee in the morning and then again at night. And, he is sure a handy guy to have around I know that I don't think that I could have gotten through this whole TM thing without him, he's been so good at accepting the changes that it has made in our lives. I say accepting, and I am not sure it is the right word, as it is a hard thing to say. We do have to accept it, don't have to like it as none of us do, but we just roll with it. It just is what it is. Can't change it, and cannot deny it anymore, although I tried that for about! 18 months. Now, it's been almost 10 years. I use 40 mg Baclofen at night for spasms, and generally it works pretty well, although there are those nights when it doesn't seem to work. Maybe it is and if I hadn't taken it, they would be a whole lot worse, but they definately keep me from sleeping. That is usually on a day that I've done too much. I've had 2 DVT's in my left leg, and sometimes I think that the problems and pain in that leg are worse than the complications that TM has caused in my life. Although, I didn't get the DVT's until I was in the hospital paralyzed from TM. Darned leg! But I have slept 3 nights straight and am a happy camper today. Yippee! I hope you all can take something positive from me and do something positive for yourself to get on the right track if you've slipped off as well. Hugs to all, Barbara A -- Can't afford a new spring wardrobe? Go shopping in your closet instead!
Re: [TMIC] Enough sleep and husbands
Bobby Jim I can't do those type of exercises. I wouldn't be able to feel if I'm doing them or not. I actually don't go that much during the day which is fine with me. I go more at night when I think my body relaxes and is not all tightened up trying to keep me from falling over while walking etc. At least that is my theory. Heather in Calgary - Original Message - From: bobby jim To: Pieter and Heather ; rn11...@yahoo.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 6:34 PM Subject: Re: [TMIC] Enough sleep and husbands Well, my urologist told me that the sphincter muscle around the bladder gets tight with age and needs to be relaxed with meds. For men it's Flomax (and others), for women, dunno. I did get some exercises similar to kegels to keep my muscles working and prevent 'spills': 1.- If possible, perform exercise upon rising 2.- With both rectal and bladder muscles try to hold back urine. 3.- Walk around the room concentrating on holding back urine and then cough. (pretending to hold a heavy book between your legs as you walk also helps--rjh) 4.- Bend over and pick up something from the floor; sit on a chair and then stand up. 5.- Relax rectal and bladder muscles and start to void; when the stream has started tighten muscles again to stop the stream. 6.- Repeat 3 4 and 5 twice, then empty the bladder completely. 7.- Perform the exercise twice a day. -- Regards, BobbyJim From: Pieter and HeatherTo: rn11...@yahoo.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 12:06 PM Subject: Re: [TMIC] Enough sleep and husbands Cheryl, Two years prior to TM I had 'bladder repair surgery' because of incontinence when sneezing, laughing, walking too fast etc. At least I had 2 years where I was safe from that problem. After TM I now again have the problem which no surgery will help. Kind of ironic I guess. However, I do wonder if having the surgery in 2001, two years prior to TM has helped me not have too many problems except at night. Heather in Calgary - Original Message - From: rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Friday, May 01, 2009 7:27 AM Subject: [TMIC] Enough sleep and husbands Hi Everyone, I have not slept more than 4 hrs straight in over 30 years!Usually manage about 3 hrs. Before tm,I had bladder issues,and was up several times a night (or day,when I worked the 7p-7:30a shift).Then after tm,I had incontinence problems while paralyzed and in rehab.That passed,and I only have to run to the bathroom if I drink caffeinated beverages. Many of you praise your husbands. My ex husband (divorced in 1985 after 22 yrs and 10 yrs before tm hit me) mows my lawn,trims bushes,trees,rakes leaves,cleans the gutters in the fall and gets rid of the snow in winter.All without me ever asking him to do it! We get along better now than we ever did before.Probably because we don't live together :). Best wishes to all, Cheryl in Easthampton,Mass.
Re: [TMIC] New Month, New Efforts
Akua, That is great that you are back doing what you like in writing the poetry. I am very happy that you have a new neurologist who is also close to you. Sounds like he will be a person who is more in tune with you and the problems with TM. Good luck with your other endeavours too. Unfortunately I'm no help with any of the transit things there where you are in the USA. Hope you can find someone who is familiar with these things. Heather in Calgary - Original Message - From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Friday, May 01, 2009 3:40 PM Subject: [TMIC] New Month, New Efforts April was National Poetry Month and I met the challenge of writing at least one poem a day every day in response to prompts. Over 30 new works!!! I am so proud of me, as since contracting TM, my writing has suffered, as has my reading. I wrote a couple of poems about my condition-- which I generally avoid. Yesterday after a long struggle(10 months) I got to see a neurologist a few blocks away, who listened, renewed my script for Naltrexone and is pursuing getting me therapy at home! (The neurologist I went to in my pcp's practice took my money and told me he only does stroke would ONLY refer me Strong Hospital, which is 110 unreachable (and unaffordable $700 roundtrip) miles away and refused to renew my script) I slept today until 1p.m. (9 hours) and i didn't realize how much energy it took. I found out that the deadline for the 5310 grants for paratransit vehicles was today. But I learned that there is a taxi service that has a van in the city next-door. Their costs are prohibitive ($36), but not outlandish ( like the school bus company that charges $75 just to show up). Again if anyone has any information on nonprofit startups or funding for paratransits, it would be welcome. Happy May Day! Akua --
Re: [TMIC] RE: wow, you work too hard Trudy
Linda, I know what you mean about shutting your eyes in the shower. It was well after the 2 yr mark that one day I got out of the shower and it hit me. I had shut my eyes to wash my hair and I didn't have to touch the wall. From time to time I still just touch the shower wall or glass door with my elbow but not like I did for the first few years. (I'm at 5 1/2 yrs now). So yes I guess little things improve from time to time. Heather in Calgary - Original Message - From: L T CHERPESKI To: Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com ; Janice Sent: Friday, May 01, 2009 9:33 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Janice, you're so funny. The more questions, the better. Then we all learn something. About the cathing, I have had TM for 7 years now and have had to cath from the beginning. I couldn't feel that I had to go so I needed to put myself on a pee schedule Then my doctor sent me to a urologist who worked with people with neurological issues. She was great - after some testing (just a tad bit embarrassing) she diagnosed me with neurogenic bladder. In my case, I could not empty my bladder completely. However, I had a very strange thing happen about 2 months ago. I had just finished another round of Rituxan infusions and one day realized that I hadn't cathed! Miracle of all miracles. I still cath before bed just to make sure I don't need to get up in the night. I really have stopped thinking there is a time limit on this TM stuff. I've seen small improvements in the last few years that really surprised me. Like washing my hair in the shower and being able to close my eyes without one hand on the glass door. Sometimes I still need to hang on or I will lose my balance, but I could NEVER close my eyes before. Some of these things may seem small, but when you could not do it for years, it's actually huge. I hope you and all the rest of us will continue to improve for many years to come. Oh, just one more thing - Janice, nothing is too embarrassing to talk about here! We've either been there ourselves or know someone who has. So go for it! hugs, Linda (Eagle, ID) - Original Message - From: Janice To: Trudy OGILVIE ; balmat...@aol.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 6:49 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy This is Janice, As usual, I have another question. How many of you have to cath? Do you know if that is from having a catheter in too long when in the hospital, or is it a result of paralyzation onset taking a long time to come back? Do you still feel improvement - cathing less, fewer wet pants/pads, more control? Do you wake up in the nite to an already wet bed - you don't yet feel when you are peeing until it is too late? I have not gotten control yet after almost 2 1/2 years. I am improving, but not there yet. Wonder if it will ever heal. Just wondered if those of you that have had TM longer have seen any improvement after the 2-year mark. Thanks for any responses I get.I realize this is personal. Janice - Original Message - From: Trudy OGILVIE To: balmat...@aol.com ; tmic-list@eskimo.com Sent: Friday, May 01, 2009 3:27 PM Subject: [TMIC] RE: wow, you work too hard Trudy Hi Barbara, Congrats on having 3 good nights of sleep! I'll bet you feel like a whole new person.. I really don't work so hard, I do pace myself and if it doesn't get done it doesn't get done. I do have someone come in every other week to help me so I'm fortunate for that. My washing machine broke and I am now trying to catch up on that disaster. My husband (Mac) is fantastic to me. It's odd in that seven yrs. ago when this hit we were having some difficulties that all changed when TM came along. Crazy I know. so is this damn TM .. only those of you on this list can understand words like banding, numbness, fire and ice. change your shoes . watch out... change your clothes . watch out.. But I am back and committed to doing my exercises. I do feel much better and a real sense of accomplishment. Again, so glad you're sleeping, it makes a huge difference. Take care - Blessings! Trudy Springfield, Va (the sun just peeked out - it's supposed to go away for the weekend. Worrying does not empty tomorrow of its troubles; It empties today of its strengths. -- To: mother...@msn.com; tmic-list@eskimo.com Subject: wow, you work too hard Trudy Date: Thu, 30 Apr 2009 17:00:22 -0400 From: balmat...@aol.com Hi Trudy, You work too hard, I could not clean all day, whether I wanted to or not. If not for a automatic washer/dryer, the wash would
Re: [TMIC] wow, you work too hard Trudy
Barbara, Has your doctor ever suggested or have you ever tried Zanaflex? It is also a muscle relaxant. I take 40 mg of Baclofen in 4 divided doses throughout the day and one of the doses is at bedtime. However, I also take a 4mg tablet of Zanaflex right before bed. I find that I do not have to get up to the bathroom every 2 hours during the night. Now I am able to go 4 or and sometimes 5 hours at a time during the night. That happened when I started the Zanaflex. Makes a big difference when we get a pretty good night sleep. I know that some other people on the list take more Zanaflex than that but for me it works. Heather in Calgary - Original Message - From: balmat...@aol.com To: mother...@msn.com ; tmic-list@eskimo.com Sent: Thursday, April 30, 2009 3:00 PM Subject: [TMIC] wow, you work too hard Trudy Hi Trudy, You work too hard, I could not clean all day, whether I wanted to or not. If not for a automatic washer/dryer, the wash would not get done. And, if it goes for floors, I can do a small amount but not a lot. It kills my back, and I'm in bed for days. So, it's someone else's job. I do clean the spots on the kitchen floor iwth paper towels though from time to time, since hubby or daughter in-law aren't really responsive on the job, lol. It doesn't seem to be as important to them that it is and looks clean as it is to me. My speed is dusting and cleaning kitchen/bathrooms and laundry. I can do most things that are off the floor and I cannot do too much in a day and still manage to cook dinner. I don't cook dinner everyday, but try to do it most days. Pete (hubby) usually handles breakfast most days and it's a nice trade off as he loves breakfast. That's one of the good parts of his retirement. He also makes my coffee in the morning and then again at night. And, he is sure a handy guy to have around I know that I don't think that I could have gotten through this whole TM thing without him, he's been so good at accepting the changes that it has made in our lives. I say accepting, and I am not sure it is the right word, as it is a hard thing to say. We do have to accept it, don't have to like it as none of us do, but we just roll with it. It just is what it is. Can't change it, and cannot deny it anymore, although I tried that for about! 18 months. Now, it's been almost 10 years. I use 40 mg Baclofen at night for spasms, and generally it works pretty well, although there are those nights when it doesn't seem to work. Maybe it is and if I hadn't taken it, they would be a whole lot worse, but they definately keep me from sleeping. That is usually on a day that I've done too much. I've had 2 DVT's in my left leg, and sometimes I think that the problems and pain in that leg are worse than the complications that TM has caused in my life. Although, I didn't get the DVT's until I was in the hospital paralyzed from TM. Darned leg! But I have slept 3 nights straight and am a happy camper today. Yippee! I hope you all can take something positive from me and do something positive for yourself to get on the right track if you've slipped off as well. Hugs to all, Barbara A -- Can't afford a new spring wardrobe? Go shopping in your closet instead!
[TMIC] misc
AOL Email
Hi Jude,
Not to worry Jude. Barbara has sent a note to me to say that she does indeed
have another computer - a laptop and uses it all the time. They also have
several TV's. I think that Barbara like me this year was just tired of the
long winter and needed that little extra push to get outside.
Nice to hear from you and hope you are doing okay.
{Hugs}
Heather in Calgary
- Original Message -
From: heyjude48...@aol.com
To: pieterheat...@shaw.ca ; tmic-l...@eskimo.comi
Sent: Wednesday, April 29, 2009 4:47 AM
Subject: Re: [TMIC] misc
Do we need to have a fund raiser so that Barbara can have a lap top of
her own? Mine was $600 on sale at Dell. We might find something on eBay or
one of the other sale sites.
I know that the economy is bad. The last computer was paid for by
myself and one other person and we vowed to never do it again, but Barbara is a
special someone and we need to do something for her, just because.
Dave and I will give $100 or so. What can you afford to give to help a
very special, long-standing member of the TMIC. She has put in plenty of hours
helping people who ask for support. Now it's time for payback.
Jude Hoops
6067 East Frances Rd.
Mt. Morris, MI 48458
I will be happy to collect and keep track of all monies sent for a
Laptop For Barbara. I will research whether there is money in the TMIC fund.
And, I appreciate your help in supporting someone so dear to our hearts.
Peace and Prayers,
Jude
In a message dated 4/28/2009 12:37:38 P.M. Eastern Daylight Time,
pieterheat...@shaw.ca writes:
Barbara,
Any chance you could get a second TV or second computer just for
yourself? Just a thought.
Heather in Calgary
- Original Message -
From: balmat...@aol.com
To: rp...@neillsupply.com ; tmic-list@eskimo.com
Sent: Monday, April 27, 2009 11:03 PM
Subject: Re: [TMIC] misc
Hi Rob,
Thanks for your message, and I'm so glad I could improve your day
with mine to you. I am sending this message to the whole group, so they can
see what's up with me as well.
I really am not feeling sorry for myself. I am not sleeping well,
I wake up so many times at night with my legs in pain, once I finally get to
sleep. It is at least 3am before my legs settle down enough to get to sleep
for a bit, unless I take a Vicodin. I usally sleep for anything between 15
minutes and an hour on many nights, and this goes on until anytime between 10am
and noon, when I finally drag my butt out of bed. I am exhausted. I take a
Vicodin usually 3 days a week, just to catch up on some sleep. I need to use
some of my marijuana tincture at night or a brownie on more nights, but that
doesn't always work. Between the two, if one of these methods is used almost
every night, I should be better off in the sleep category. I lowered my daily
dosage of Neurontin over the past year and my pain level has increased. My
Neurontin dosage was up pretty high at 5200/day, and I really wanted it lower!
ed, so I was able to lower 3600/day now, but I am paying the price during the
night. I also went on Lyrica at 50/mg 3x/day.
My husband retired last year and became interested in politics for
the first time in his life, so he watches the news a lot. It's on so much of
the day, and then he watches the History Channel, Military Channel and
CARTOONS!! He's always watched some cartoons, but it's just too much, so after
I do what I need to and sit out in the family room for a bit, I leave the area.
I just can't stand it. He also uses the computer, but while on the TV. If I
ask to change the channel, it usually annoys him, so it's often easier to just
let it go.
I know that we all have our own living situations, and he's really
a great guy. He just has his own things that annoy me, and I have mine that do
the same to him. And, I really try to live by the rule now that I need to pick
my battles. I stand up for my place in the family room periodically and take
control of the TV and enjoy something together or alone. Then, once he goes to
bed and I cannot sleep, I watch TV in there while I am waiting to be able to
sleep.
Over the winter hits we don't get out much, although we did take a
Panama Canal Cruise for his retirement, but it was during October, so he was
pre-occupied with election stuff. He scoped out a TV in one of the lounges
that usually had the news on during the day, and we had a TV in our room. We
enjoyed ourselves though, and it was a good trip. In February we went to So.
California (we live in No. California) to get out of the cold and enjoyed the
warmer weather for a week. I just need to get away a bit if I can, winter
really gives me problems, both
Re: [TMIC] The Spoon Theory
Trudy and others. Here is the website for the Spoon Theory http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf Heather in Calgary - Original Message - From: Trudy OGILVIE To: balmat...@aol.com ; tmic-list@eskimo.com Sent: Wednesday, April 29, 2009 11:34 AM Subject: RE: [TMIC] copy of my response Barbara, You have always been there for everyone on this TMIC list... with hugs and all. I had no idea you were in so much pain. Sleep is crucial to even trying to have a good day. It's rainy and miserable here and my legs are giving me some real problems. I did take a vicodin since I will be here in the house all day cleaning etc. (my clothes washer has been broken for a week :) I also have learned to give myself some recuperation time when I've over done it. Someone a very, very long time ago posted the spoon theory. I thought I had saved it. But it was a great way to explain how fatigue, pain etc... effect your day. You've only got so many spoons Taking a shower, blow drying your hair, just getting out the door uses up a spoon or three!... I don't remember it all but it was a great way of explaining your day to friends cause of course we all look so good how could we be in that much pain or fatigue or anxiety Take care and hugs to you! Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths. -- To: tmic-list@eskimo.com Date: Wed, 29 Apr 2009 00:03:45 -0400 From: balmat...@aol.com Subject: [TMIC] copy of my response I forgot to include the TMIC when I answered these nice messages of advice so I am forwarding to the group. Thanks again ladies and Rob. Hugs, Barbara A -Original Message- From: balmat...@aol.com To: marieke...@hotmail.com; pieterheat...@shaw.ca; jan...@centurytel.net Sent: Tue, 28 Apr 2009 8:56 pm Subject: Re: [TMIC] RE: tmic-digest Digest V2009 #361 Hello Ladies, I already have another TV, actually, we have 5 TV's in the house and I have my own laptop, with WIFI. I didn't ever think of taking it outside though, that's something interesting to try and see if it'll work. That's one of the reasons that I've been in the bedroom so much though, lol!!! It's been too easy to do. It's ok if I spend most of the day when I need to recuperate after a day of overdoing it, but I just don't want it to be too big in my life, and that is what had occured. I am working on that not happening too often now, and so far, so good. Thanks for all the support! I appreciate it!!! Hugs, Barbara A -- Can't afford a new spring wardrobe? Go shopping in your closet instead! -- Can't afford a new spring wardrobe? Go shopping in your closet instead! -- Rediscover Hotmail®: Get quick friend updates right in your inbox. Check it out.
Re: [TMIC] SURG ON FRIDAY
Jeff, Good luck with your surgery. Let us know how you make out. Heather in Calgary - Original Message - From: jeff bernier To: msersl...@yahoogroups.com ; tmic-list@eskimo.com Sent: Wednesday, April 29, 2009 12:41 PM Subject: [TMIC] SURG ON FRIDAY I HAVE SURG ON FRIDAY TO REMOVE A MASS ON THE BACK OF MY NECK,AFTER YEARS OF BEING DX WITH MS AND THE DOCS TELLING ME IT ISNT RELATED TO MY CONDITION IM FINALLY GETTING IT TAKEN OUT. JUST A NOTE,I KNOW 2 OTHER PEOPLE THAT HAVE HAD THE SAME PROBLEM AS MY SELF,ONE OF THEM WAS WAS DX WITH MS 22 YEARS AGO.THEY BOTH HAD THE MASS REMOVED AND ARE NOW FUNCTIONING NORMALLY WITH NO OTHER COMPLICATIONS,SO GO FIGURE! JEFF DIPLOMACY DOES NOT WORK WHEN DEALING WITH NUT'S HELL BENT ON DESTROYING US.
Re: [TMIC] misc
Barbara, Any chance you could get a second TV or second computer just for yourself? Just a thought. Heather in Calgary - Original Message - From: balmat...@aol.com To: rp...@neillsupply.com ; tmic-list@eskimo.com Sent: Monday, April 27, 2009 11:03 PM Subject: Re: [TMIC] misc Hi Rob, Thanks for your message, and I'm so glad I could improve your day with mine to you. I am sending this message to the whole group, so they can see what's up with me as well. I really am not feeling sorry for myself. I am not sleeping well, I wake up so many times at night with my legs in pain, once I finally get to sleep. It is at least 3am before my legs settle down enough to get to sleep for a bit, unless I take a Vicodin. I usally sleep for anything between 15 minutes and an hour on many nights, and this goes on until anytime between 10am and noon, when I finally drag my butt out of bed. I am exhausted. I take a Vicodin usually 3 days a week, just to catch up on some sleep. I need to use some of my marijuana tincture at night or a brownie on more nights, but that doesn't always work. Between the two, if one of these methods is used almost every night, I should be better off in the sleep category. I lowered my daily dosage of Neurontin over the past year and my pain level has increased. My Neurontin dosage was up pretty high at 5200/day, and I really wanted it lower! ed, so I was able to lower 3600/day now, but I am paying the price during the night. I also went on Lyrica at 50/mg 3x/day. My husband retired last year and became interested in politics for the first time in his life, so he watches the news a lot. It's on so much of the day, and then he watches the History Channel, Military Channel and CARTOONS!! He's always watched some cartoons, but it's just too much, so after I do what I need to and sit out in the family room for a bit, I leave the area. I just can't stand it. He also uses the computer, but while on the TV. If I ask to change the channel, it usually annoys him, so it's often easier to just let it go. I know that we all have our own living situations, and he's really a great guy. He just has his own things that annoy me, and I have mine that do the same to him. And, I really try to live by the rule now that I need to pick my battles. I stand up for my place in the family room periodically and take control of the TV and enjoy something together or alone. Then, once he goes to bed and I cannot sleep, I watch TV in there while I am waiting to be able to sleep. Over the winter hits we don't get out much, although we did take a Panama Canal Cruise for his retirement, but it was during October, so he was pre-occupied with election stuff. He scoped out a TV in one of the lounges that usually had the news on during the day, and we had a TV in our room. We enjoyed ourselves though, and it was a good trip. In February we went to So. California (we live in No. California) to get out of the cold and enjoyed the warmer weather for a week. I just need to get away a bit if I can, winter really gives me problems, both physically and then mentally since I ache so much more. I just don't know how you people who live in the REAL cold climates do it. Since I wrote you, I have been out of my room a lot more, and have gotten outside, picked lemons off my lemon tree and have prepared a many more meals than usual, and even done some visiting as well. I am moving around the house more again, and on Saturday I am meeting my sisters for a day of lunch, massages, and then tea. So, I've gotten back to a start in the right track, but I appreciate the boost (Kick in the Butt) from you Rob!!! Take care all, and warm hugs to everyone as well. Barbara A in Auburn, CA -Original Message- From: Robert Pall rp...@neillsupply.com To: balmat...@aol.com Sent: Mon, 27 Apr 2009 5:01 am Subject: RE: [TMIC] misc Barbara...your response just made a lousy Monday morning at work a little nicer ...thank you ...now get busy living your life and stop feeling sorry for yourself. All the best! Rob -- From: balmat...@aol.com [mailto:balmat...@aol.com] Sent: Saturday, April 25, 2009 9:33 PM To: Robert Pall; tmic-list@eskimo.com Subject: Re: [TMIC] misc Hello Rob and all, I am so glad that you sent in this email today. I think it just may be the kick in the butt that I need to get out of my bedroom and on with my life. I am still kind of in a funk, not as bad as the usual winter funk, but still haven't been able to totally bring myself out of it either. I know that the state of the economy and politics have been consuming too much of my life recently, and with my hubby retiring last year, as the saying goes, twice as much hubby and half as much money. Could not be truer than these days, as if we
Re: [TMIC] misc
miscRob,
This is a really great piece you have written. Sounds so very much like a lot
of the rest of us. I had tears in my eyes reading it.
Good for you for writing this. I'm glad that you too think that 'normal' is
overrated. Me too.
I do hope that you have shown this writing to your wife. Perhaps she will
understand just a little better how you feel.
{{Hugs}}
Heather in Calgary
- Original Message -
From: Robert Pall
To: tmic
Sent: Friday, April 24, 2009 12:23 PM
Subject: [TMIC] misc
I tried sending this with an attachment and it did not go thru.I am trying it
again with a cut and paste and hopefully the group will receive it!
I have been reading all of the many posts many of which are heartbreaking. I
can only relate to my own personal experiences. First of all living in a large
urban area where access to excellent medical facilities are in abunbdance
helped me. Within 24 hours I was taking 1000 mg per day of prednisone
(steroids) which I believe limited the damage to my spine. After going to
numerous Drs, physical therapists and even chiropractors I came to realize that
after passing the one year mark I would not get much better. Ten years ago I
started seeing Dr. Kerr and have done so once annually since then. He gives me
very little hope of a cure in the near future but he does treat my symptoms
(banding,hot/cold,numbness etc,)I therefore view my condition as one
requiring pain managemnt vs a cure. I think acceptance of our condition is
imperative...I try every day to not let TM dictate my life. TM has not reduced
my bucket list it has simply made me make some adjustments due to what I am
capable of doing physically.
What make this group (as well as my New Jersey support group) so special is
that we are discussing our problems and limitations with people who understand
and are eager to pass on their own sucesses in order to help all of us.
It appears that recently this site is doing exactly what it is meant to
do...post questions,get answers and help us to all remember we are not alone. I
recently posted an essay I wrote (for no reason except I wanted to put down on
paper what I could not or would not speak aloud). The title of the essay is
normal. I am attaching it to this email for the new members and the ones who
have not previously read it. I encourage all of you to put down on paper your
feelings regarding TM...and hopefully by doing that it helps put our head in
the right direction. Life is short...do everything you can to live it to its
fullest...TM is a challenge and the ones that handle it best I believe have
acquired some acceptance.
OK that is more than enough for one writing!
All the best!
Rob in New Jersey
NORMAL
Normal..what a simple word! This is a word I took for granted until
one week past my 50th birthday. What did normal mean to me? Normal meant being
like everyone else..it was being able to run, walk, exercise, climb up stairs,
play sports.basically being able to do everything that normal people do
without giving it a thought. I guess I figured as I got older I would slow down
a little.maybe replace basketball with golf. Perhaps I would have to exercise a
little longer to stay in shape.no big deal.this was normal. Sure like all
normal people I would get sick from time to time and maybe break a bone or
two..but I always knew that I would get better.and until one week after my 50th
birthday that was just how life was.normal.
Now let us go back 11 or so years where in a period of several hours
I went from normal to cripple. In a few hours I had zero feeling from my
waist down..that can't be possible.I had played ball all weekend.there had to
be a simple answer. Maybe a pinched nerve or something like that...the idea
that I would never be normal again never crossed my mind.I was sure it would be
just a matter of time until I was all better.and normal again . Even after 3
MRI's and 2 Lumbar Punctures I was certain that Dr. House would figure out the
problem, give me some medicine and I would be all better.I would be normal
again.just like everybody else I knew.
Three weeks after being crippled from the waist down I was told what
I have...Transverse Myelitis..what the heck is that.I never heard the words
before and had no idea of their meaning. The Neurologist at the top New York
City hospital explained it to me.he said he was sure I would eventually walk
again.but he could not say for sure what assistance I would need. Perhaps a
walker (how embarrassing), maybe a quad cane (better but not great) and if I
was lucky perhaps I could graduate to a straight cane (better but not normal)
After spending 3 weeks in the hospital I was transferred to the
Kessler Rehabilitation facility in West Orange, New Jersey (same place
Christopher Reeves rehabbed in). Slowly over a period of 3 months I started
getting a little better.I went
Re: [TMIC] let me clarify
Just entertainment watching a pool boy..LOL :) - Original Message - From: jrushton To: cjb...@aol.com ; tmic Sent: Saturday, April 25, 2009 3:05 PM Subject: Re: [TMIC] let me clarify Good thing you clarified that.:) ---Original Message--- From: cjb...@aol.com Date: 4/25/2009 4:29:16 PM To: tmic-list@eskimo.com Subject: [TMIC] let me clarify The pool boy is for keeping it clean, not for my entertainment! Check all of your email inboxes from anywhere on the web. Try the new Email Toolbar now! tile12.jpg
Re: [TMIC] using a T.E.N.S try unit
Carol, I'm glad it has helped Jim so much. Marieke also from Canada uses the Tens machine with much success as well. I'm sure she will chime in soon and say the same. It helps a lot of people. Heather in Calgary - Original Message - From: cjb...@aol.com To: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 5:14 PM Subject: [TMIC] using a T.E.N.S try unit Hi friends, I just read the message about being told it was bogus to use an electric shock like device. My husband jim has had TM since May 2005. A church friend who is a physical therapist suggested Jim try it, we had a tens unit from awhile back to help with pain. George told Jim where to place the pads to help the hamstring. In less than a week he went from 20% to 75% movement. Its to early to be sure how much movement he will get, but he is certain its not bogus. We will keep you all posted, carol and jim -- Big savings on Dell XPS Laptops and Desktops!
[TMIC] Promising news
This interesting article appeared in our Calgary newspaper this morning. It is in regards to some special underwear being developed in Edmonton Alberta Canada that reasearchers hope will prevent life-threatening pressure ulcers fro people who are immobile or paralyzed. If you just click on the link it will take you to the article. Heather in Calgary http://www.calgaryherald.com/Underwear+could+lifesaver/1518068/story.html :
Re: [TMIC] testing
Got you here Jeanne. Heather in Calgary - Original Message - From: jrushton To: tmic Sent: Tuesday, April 21, 2009 11:56 AM Subject: [TMIC] testing Just checking to see if I'm still 'alive' on tmic???
Re: [TMIC] leg and foot comfort in bed
Janice, Allen Rucker was on here for a little while. I too read his book. Borrowed it from the library after I heard about it. He was one of the speakers at the Symposium in Seattle last summer. Heather in Calgary - Original Message - From: Janice To: patticoo...@wi.rr.com ; tmic-list@eskimo.com ; balmat...@aol.com Sent: Tuesday, April 21, 2009 6:55 PM Subject: Re: [TMIC] leg and foot comfort in bed Actually, the way I got in contact with this group is from a TM'er that did write a book about his TM experience. I contacted him after reading the book and after 2-3 emails he asked me if I had joined this group. So I did! Funny thing though, he hasn't joined in with any emails. He lives in California and is a writer as an occupation. His book is The Best Seat in the House and the author is Allen Rucker. He has had TM for about 9 years. I identified with some of it too.Janice - Original Message - From: balmat...@aol.com To: jan...@centurytel.net ; patticoo...@wi.rr.com ; tmic-list@eskimo.com Sent: Monday, April 20, 2009 11:13 PM Subject: Re: [TMIC] leg and foot comfort in bed Absolutely Janice, I was like a Raggedy Ann doll. Totally floppy from the waist down, couldn't sit without being propped up, and no matter what position my legs were put in, they flopped. It is painful to look back and see what I was like when TM happened, but good to see how far I've come. I often forget about all that has happened to me, all the strange little occurances as well. I could write a book, but then, I really wouldn't want to write it all down, and surely, I doubt anyone would want to read as much of it as there is. We've come a long way baby! Hugs to all! Barbara A -Original Message- From: Janice jan...@centurytel.net To: Patricia Cooley patticoo...@wi.rr.com; tmic-list@eskimo.com; balmat...@aol.com Sent: Sun, 19 Apr 2009 8:34 pm Subject: Re: [TMIC] leg and foot comfort in bed You reminded me of my old hospital days where I could not turn over without help, or slide up in the bed. When you can look back and see where your body has actually gotten stronger - even with the problems TM has left us - you realize how fortunate we are. I am comparing us to 2 people I know that are dying of cancer. Parts of our lives are the pits, but we know we have our lives to live and in most cases, improvement to look forward to. Jance - Original Message - From: Patricia Cooley To: 'Janice' ; tmic-list@eskimo.com ; balmat...@aol.com Sent: Sunday, April 19, 2009 10:47 AM Subject: RE: [TMIC] leg and foot comfort in bed I, TOO, AM FORTUNATE THAT I DON’T HAVE ANY SKIN SENSITIVITY. I ALSO DON’T HAVE THE PAIN SO MANY OF US HAVE. I DO HAVE A SPASMS IN MY LEFT LEG ONCE IN A WHILE. IN FACT, I CAN CAUSE A SPASM BY TURNING MY LEFT FOOT TO THE LEFT AND ALL OF A SUDDEN I CAN FEEL A SPASM. WHEN I GOT TM AND WAS IN THE HOSPITAL I WAS UNABLE TO TURN OVER AND HAD TO SLEEP ON MY BACK WHICH WAS ALSO SO UNCOMFORTABLE BEFORE. I FOUND THE HOSPITAL BED PROVIDED SOME RELIEF AS I COULD RAISE THE HEAD OF THE BED SO I WASN’T SO FLAT ON MY BACK. I WAS EVEN NOT ABLE TO LIFT MY LEGS UP IF THEY SLID OFF THE SIDE OF THE BAD AND HAD TO RING FOR A NURSE. I HAVE A STRONG RAILING ON THE SIDE OF MY BED WHICH MADE IT POSSIBLE FOR ME TO FINALLY TURN OVER. I HAVE IMPROVED TREMDOUSLY AND AM ABLE TO TURN OVER WITHOUT MUCH ASSISTANCE. ONE OF MY PROBLEMS THIS PAST WINTER WAS I WAS ALWAYS SO COLD??? I SLEPT IN FLANNEL NIGHTGOWNS AND AT LEAST 3-4 BLANKETS. IT WAS THE ONLY PLACE I COULD GET WARM. WITH WARMER TEMPS I AM NOW ABLE TO SWITCH TO SUMMER SLEEPWEAR. AS MUCH AS I FEEL SORRY FOR MYSELF AT TIMES, I KNOW HOW VERY LUCKY I AM THAT I DON’T SUFFER MANY OF THE PROBLEMS A LOT OF TM’ERS DO. MY MENTAL OUTLOOK HAS IMPROVED TREMDOUSLY, WHICH I THINK IS BECAUSE OF ALL THE SUPPORT FROM ALL OF YOU ON THIS WEB SITE. PATTI IN WISCONSIN From: Janice=2 0[mailto:jan...@centurytel.net] Sent: Saturday, April 18, 2009 11:34 PM To: tmic-list@eskimo.com; balmat...@aol.com Subject: Re: [TMIC] leg and foot comfort in bed I am s fortunate that I don't have the skin sensitivity that so many of you talk about.If I pull up something really soft, like my gown or robe, I will spasm for a minute, but I don't really have pain, just discomfort and only for a minute. I would think that the cotton knit would be a blessing. I like 100% cotton to sleep in for summer - it helps keep me cool. Janice - Original Message - From: balmat...@aol.com To: tmic-list@eskimo.com Sent: Thursday, April 16, 2009 12:20 AM Subject: Re: [TMIC] leg and foot comfort in bed I am such a happy camper with my cotton knit. Such a miraculous
Re: [TMIC] (no subject)
Sandy, Was thinking about Terry today. Realizing he has surgery tomorrow. Please let us know how he makes out. Heather in Calgary - Original Message - From: parkersw...@aol.com To: tmic-list@eskimo.com Sent: Monday, April 20, 2009 2:01 PM Subject: [TMIC] (no subject) Hi Everyone, I was un-subscribed for awhile when we decided to run away to Mexico for a week last month and just got back on board today. I hope everyone is doing well. How is our Jude? (Make mental note to self to write her privately) It's very hot here today. Spring has not completely sprung here in Ventura, yet the heat of the summer is upon us with a vengeance as of yesterday. 99 degrees. I was SO looking forward to Spring... I hope it reappears soon. Terry is having some difficulties and at long last, gets his second (complete) shoulder replacement tomorrow. He is looking forward to it, but not the recovery as he will be down to one limb, (so to speak), until he has the mobility back in it. Hopefully he'll be pain free once he's recovered, too. I will keep you posted. As always, I am so glad you are in my life! Sandy Parker -- Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!
Re: [TMIC] leg and foot comfort in bed
I keep saying we are like 'snowflakes' a lot the same but no two exactly the same. I did say 'snowflakes' and not just 'flaky' .. :) Heather in Calgary - Original Message - From: Gillian Clark To: TM list Sent: Monday, April 20, 2009 9:11 PM Subject: Re: [TMIC] leg and foot comfort in bed Yep, so much the same and so very different. That's just another reason this list is so wonderful, there are so many solutions offered to all sorts of problems. - Original Message - From: Janice To: Gillian Clark ; TM list Sent: Tuesday, April 21, 2009 12:19 PM Subject: Re: [TMIC] leg and foot comfort in bed We all find what makes us comfortable. Funny how different we all are. janice - Original Message - From: Gillian Clark To: TM list Sent: Monday, April 20, 2009 12:22 AM Subject: Re: [TMIC] leg and foot comfort in bed Janice, I am now able to move enough to get on my side but the pain is intolerable in that position and I can't do the pillow between the legs thing. I think it might be because they are too short and far too fat! hugs Gilly - Original Message - From: Janice To: Gillian Clark ; TM list Sent: Sunday, April 19, 2009 2:27 PM Subject: Re: [TMIC] leg and foot comfort in bed Just thought I'd let you know that I am completely opposite. I can not sleep on my back. I really spasm around my middle section trying to get in that position and trying to get back up is a nitemare. I stick to sleeping on my side with a pillow between my legs to lessen spasms. Also take baclofen for spasms - helps a lot. I also have developed a thing of needing to have air movement when I go to bed. I have the ceiling fan going on no matter what the room temperature is. I just need air movement. This has really been an adventure/nitemare. Love the support of family and friends - and other TM'ers! - Original Message - From: Gillian Clark To: TM list Sent: Thursday, April 16, 2009 10:04 PM Subject: Re: [TMIC] leg and foot comfort in bed It has only just occurred to me that sleeping on my back is the only way I have slept now for years. Since the day of the attack I haven't been able to sleep any other way, in the beginning, I couldn't move at all from that position, I can now at least move my legs into a more comfy position. I can't sleep with them bent up though Barb, that causes huge spasms. Everything hurts, no matter what but it's trying to minimize the pain is the answer isn't it? I know that when you are new to this crap it's so hard to realise the things that you suddenly have to pay attention to. Not only what you wear but where you are walking, avoiding anything that will brush on you. Shopping is a nightmare when someone brushes past etc. Since I was born being unconventional a lot of things came easily for me. If you were not born that way, it's time to change and not give an obese rodent's derriere what anyone else thinks. Find what works for you and don't worry about what the normal people are doing. I think I've just about got my life into a reasonable degree of comfort but sometimes it just changes again. hugs all Gilly - Original Message - From: balmat...@aol.com To: tmic-list@eskimo.com Sent: Thursday, April 16, 2009 2:50 PM Subject: Re: [TMIC] leg and foot comfort in bed I am such a happy camper with my cotton knit. Such a miraculous fiber. Isn't it great when we find something that works for us, most of the time It's just amazing! It's definately a game of trial and error, that's for sure. Life is so much fun when you have TM. The majority of my sensitivity is in the evening and during the night. There are times when I cannot even stand skin to skin contact. That's why I sleep on my back with my knees bent many nights. Take care everyone! Hugs, Barbara A -Original Message- From: Janice jan...@centurytel.net To: tmic-list@eskimo.com; balmat...@aol.com Sent: Wed, 15 Apr 2009 8:30 pm Subject: Re: [TMIC] leg and foot comfort in bed I have the sensitivity of cloth rubbing (or barely touching) my legs too. But, I have no problem with sheets and blankets on me at nite. I sleep with a pillow between my knees and that takes care of any problems I guess. I have slept with a summer gown all winter, otherwise I get too hot. Janice - Original Message - From: balmat...@aol.com To:
Re: [TMIC] transverse myelitis
Well, talking about feet. I guess I should say that I don't always watch my feet. Tonight would have been a good time to watch my feet but don't think it would have helped my situation. We drove into our driveway after being at the grandsons first birthday party. Husband lets me out on the driveway as we park two cars in the garage. I got out. My right foot (which is my weak foot) goes out first, followed by me turning my body, putting my left foot out and hoisting myself with my cane etc. I stood up (or tried to, like I usually do). Howevermy right foot remained firmly (and I mean firmly) planted. I moved. My right foot didn't. I was enough out of the car that I shut the car door. Then BAM...down I went. Onto my right hip, side etc. Hubby (thank goodness) couldn't figure out where I moved to so fast. (do any TMer's move fast?) Fortunately he realized that I 'moved too fast'. He got out of the car and there I was. Flat on my side. On the driveway. with my cane and purse with me. Glad he didn't try and drive into the garage. Not sure how much of me was near the car. So..not too sure if looking at my feet would have helped. Haven't had that happen for a while, that my right foot doesn't want to go when I want to. It used to happen quite often. So Pieter had to help me stand up. That is my story and I'm sticking to it. Now I just have to wait and see if I end up with a big bruise on my right hip and see if my right foot will be swollen tomorrow. Hope everyone else had a good weekend. The wee grandson had a good birthday and ate his first taste of chocolate cake. Too cute. Heather in Calgary - Original Message - From: pjv1...@chartermi.net To: tmic-list@eskimo.com; Betty Shaffer vasso...@gmail.com Sent: Sunday, April 19, 2009 6:33 PM Subject: Re: [TMIC] transverse myelitis Hi Betty Welcome to our on-line TM family. I was diagnosed in 2003 at age 53 at C4-C6. I also have balance problems and just gave in to using a walker during a short vacation. I was surprised that I was able to walk and enjoy looking at something besides my feet. I hadn't thought about the seat problem, however, your right - I look and touch before I sit. I think we TMers have trust issues. We just don't trust much of anything that has to do with where we are or where we're going to be in the next few seconds! Patti - Michigan Betty Shaffer vasso...@gmail.com wrote: I'm a new subscriber to the TM internet club and find the messages interesting. I was diagnosed with T.M. ( Cl and C 2 level) in 2004 at the age of 77. Numb from my toes up to and inclucing my neck, I rar3ly feel pain but have much discomfort from the banding, especially in my torso and neck. I walk well with a walker, but need my eyes to tell me where my feet ( and seat) are. Without the walker , balance is a problem. Anybody have problems similiar to those ? I live in a retirement home where I'm able to walk and to exercise 5 days a week, and I know this helps. There is no support group in the area Betty in Oregon
Re: [TMIC]
Trudy, The font size is just fine with me. I can read it much better than some others. I have found that with TM my vision sometimes blurs on me etc. Not like in the beginning 5 1/2 yrs ago when I couldn't even read a page in a magazine. However, once in a while I read the computer and end up squinting or eyes watering etc etc. Can't be that I'm 63 can it? LOL Good luck with your exercises. I think I should be doing some too. I find it enough to just be able to walk around. Exercises would probably help me too. I did find going for walks this past week or so was helping. However, this morning we have wakened to 'snow' that dreaded word. I wondered why my legs felt like cement and were tingly more than usual yesterday. Waking in the night to go to the bathroom my muscles were even more tight than usual. The snow outside this morning explained it all. It will melt fast (I hope) and there is not much of it but who knows. It IS spring in Alberta. Hugs and good luck with the exercises. Heather in Calgary (where it is USUALLY sunny) - Original Message - From: Trudy Ogilvie To: Janice Cc: transverse myelitis Sent: Tuesday, April 14, 2009 7:24 AM Subject: Re: [TMIC] Janice It's incredible what a difference a really good therapist can do for you! My new therapist has definitely made a difference in my walking and my attitude. I had pretty much given up after 7yrs. of any real improvement. The big BUT is you have to do your exercises faithfully every day. I took a nasty fall in an elevator and I did nothing for two weeks but rest! I cannot believe how much I have regressed. This 62 year old body just does not want to return to that exercise routine!! Boy you are so right ... blood, sweat and tears!!! ARGH!! We'll send each other positive vibes to help keep us focused! Oh you'll definitely say some prayers..like.. Oh God if she makes me do one more lunge I'm gonna die!! :) Blessings! Trudy P. S. I cannot close my eyes and balance myself. I get dizzy.. anyone else??? Please let me know if my font on my e-mails is too big??? On Tue, Apr 14, 2009 at 12:31 AM, L T CHERPESKI cherp...@msn.com wrote: Hi Janice, This new session of leg therapy sounds very positive. And I know what you mean by blood, sweat and tears - but it will definitely be worth all the effort. I am already seeing you in the pool again! No more hospital food. I will keep you in my prayers. Be sure to let us know how you're doing. Just keep visualizing that water! Hugs, Linda - Original Message - From: Janice To: transverse myelitis Sent: Monday, April 13, 2009 9:17 PM Subject: [TMIC] Well, I am really into a new session of leg therapy with a new therapist and getting excited about being able to get stronger and hopefully walk better with less pain. This therapist is supposed to be really good. This will be done with blood, sweat and tears - litterally. But, I can see me getting closer to getting into the pool again. I dearly loved my water aerobics.Please say a prayer for me as I always do for my TM friends. This is a last-ditch effort on our part. If this doesn't do it, my only alternative will be drugs and lots of sitting. The enthusiasm for swimming from you is overwhelming. I used to dream when I was in the hospital about walking in the water again. Then, I would wake up to hospital food! It is getting late, so I will sign off.Really enjoy all the issues we discuss - I learn from them. Janice
Re: [TMIC] Balance
Barbara, I find the same thing. I was especially happy one day when I realized that I could close my eyes in the shower when washing my hair. It doesn't 'always' work as I do find myself closing my eyes but tend to keep the tip of my elbow against the wall of the shower.the balance thing again. I didn't know there was a name for it. Heather in Calgary - Original Message - From: jharpe...@aol.com To: mother...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, April 14, 2009 7:32 AM Subject: Re: [TMIC] Balance Yes, that's one of my continuing problems. My balance is worse when standing still (even with eyes open) than walking, though I sometimes lose balance while walking, too. When I was taking physical therapy, my PT had a name for that, but I don't remember what it was. She had me stand on a pillow with my eyes closed and lean as far as I could in one direction and then another while she stood by to catch me if I fell (don't try this at home alone!!!) It's improved, but it is still a factor. Sometimes at church a larger group will be singing across on stage just holding their music, and I think, I could never do that! I ended up leaving choir because I felt like I couldn't keep my balance. Having some reference point helps -- the back of my legs touching a chair or just touching a table or the wall. I don't need to hold on to or lean on something, usually -- just have something to touch. Barbara H. http://barbarah.wordpress.com In a message dated 4/14/2009 9:25:04 A.M. Eastern Daylight Time, mother...@gmail.com writes: P. S. I cannot close my eyes and balance myself. I get dizzy.. anyone else??? -- The Average US Credit Score is 692. See Yours in Just 2 Easy Steps!
Re: [TMIC] Balance
Proprepceptionyep, that is the word the therapist used with me too. However, I had the hardest time trying to figure out what she meant. I could not figure out where my feet were unless I was looking at them or they had a mirror in front of me and I was trying to move one foot then the other. I could see them then. However, when they took the mirror away I was again 'lost'. My therapist tried to explain it this way. She sat in front of me and put her arm out behind her back at shoulder height. She said as she moved it up and down that the message that went from the arm to the brain and back to the arm was instantaneous. That is why when she couldn't even see her arm her brain knew where it was in space and what it was doing. However, with my legs the message that goes from the foot up the leg and then the spinal cord to the brain was interrupted because of the damage to the nerves in the spinal cord. That made sense the day she told me and I used it to try and keep focused when I was trying to get my feet to move. Not sure how it worked but eventually I got the feet to work. However, the messages still get mixed as my feet or toes legs bump into things and stub themselves and fall over things when I don't lift the feet high enough. So the messages are still garbuled 5 1/2 years later. Some of the message gets there but uses different pathways I guess. My simplistic way of understanding these things. I remember sitting in the car in a grocery store parking lot. Hubby had gone in and I sat there watching men, women, children even a little dog walking and trying to figure out how the heck they knew where their next step was going to land when I couldn't do that. It was very frustrating. Heather in Calgary (snow has stopped but it is very chilly dull) - Original Message - From: Trudy Ogilvie To: Pieter and Heather Cc: jharpe...@aol.com ; tmic-list@eskimo.com Sent: Tuesday, April 14, 2009 12:36 PM Subject: Re: [TMIC] Balance Heather Barbara, I use a chair in the shower. I do not feel safe standing in a shower.. My therapist also recommended wearing ankle weights around the house. They definitely make you aware of where your feet are most of the time. She has used the word propreoception many times and I asked her can you improve on it. She said yes, but it's a very, very slow process and she wasn't sure about my improvement. I use a walker, I am a lector (reader) at church and I can hold onto the lectern for balance. I'm so sorry Barbara you had to quit singing. When I go out with friends I use a cane. As long as I have someone's arm to hold onto I can do o.k. but I am waiting for the day that all I need is a cane Take care! Trudy (in rainy damp Virginia which is not helping my legs today!) P.S. Gunny, thanks for replying I would have been trying to remember that name all day! On Tue, Apr 14, 2009 at 1:04 PM, Pieter and Heather pieterheat...@shaw.ca wrote: Barbara, I find the same thing. I was especially happy one day when I realized that I could close my eyes in the shower when washing my hair. It doesn't 'always' work as I do find myself closing my eyes but tend to keep the tip of my elbow against the wall of the shower.the balance thing again. I didn't know there was a name for it. Heather in Calgary - Original Message - From: jharpe...@aol.com To: mother...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, April 14, 2009 7:32 AM Subject: Re: [TMIC] Balance Yes, that's one of my continuing problems. My balance is worse when standing still (even with eyes open) than walking, though I sometimes lose balance while walking, too. When I was taking physical therapy, my PT had a name for that, but I don't remember what it was. She had me stand on a pillow with my eyes closed and lean as far as I could in one direction and then another while she stood by to catch me if I fell (don't try this at home alone!!!) It's improved, but it is still a factor. Sometimes at church a larger group will be singing across on stage just holding their music, and I think, I could never do that! I ended up leaving choir because I felt like I couldn't keep my balance. Having some reference point helps -- the back of my legs touching a chair or just touching a table or the wall. I don't need to hold on to or lean on something, usually -- just have something to touch. Barbara H. http://barbarah.wordpress.com In a message dated 4/14/2009 9:25:04 A.M. Eastern Daylight Time, mother...@gmail.com writes: P. S. I cannot close my eyes and balance myself. I get dizzy.. anyone else??? -- The Average US Credit Score is 692. See Yours in Just 2 Easy Steps!
Re: [TMIC] RE: tmic-digest Digest V2009 #237
Ken, The cold air really bothers me too. That is why in the winter I stay pretty much inside. Just go from car to store to house. Cold causes spasms and the muscles just 'freeze' up. Hope you stay warm now. I guess that even in NM it gets cold. Heather in Calgary - Original Message - From: Kenneth Oliver To: tmic-list@eskimo.com Sent: Wednesday, April 08, 2009 10:00 PM Subject: [TMIC] RE: tmic-digest Digest V2009 #237 None of you have mentioned what cold does. This evening I was waiting for my son to fix my Hoveround wheel and I had a window open and the door, here in NM when the sun goes down it cools off fast. I was stuck to the recliner until I got the chair fixed. in the mean time it cooled of and I got a chill that had me in a spasm from my neck to my feet. This is after 28yrs of TM. Ken In NM -- Date: Wed, 8 Apr 2009 18:53:46 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2009 #237 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2009 : Issue 237 Today's Topics: Re: [TMIC] Re: over heating [ Janice jan...@centurytel.net ] --Forwarded Message Attachment-- Date: Wed, 8 Apr 2009 20:49:09 -0500 From: jan...@centurytel.net To: jrush...@columbiaenergyllc.com; cakal...@embarqmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Re: over heating You all are describing more of a painful heat, but what I feel is more like a menopause heat flash - but it lasts longer, and it makes me very weak and light headed.Anyone else feel that way? Janice - Original Message - From: jrushton To: CANDIS KALLEY ; tmic Sent: Wednesday, April 08, 2009 8:57 AM Subject: Re: [TMIC] Re: over heating Your words, Candy, are an echo of mine!! You could not have said it better. I was going to send you a note, Lynne, but now there is no need!!Good to have us all start to come out of the woodwork, isn't it? :)) Jeanne in Dayton ---Original Message--- From: CANDIS KALLEY Date: 4/8/2009 10:39:53 AM To: tmic-list Subject: Re: [TMIC] Re: over heating Oh the joys of TM - yes I also have the same problem - our internal thermostats are also affected. Once you go either direction, hot or cold, it seems like forever before it evens out. I don't know how many times I've woke up sweating like a race horse and then the next minute I'm freezing and it takes forever to get back to sleep. I know it's not menopause because that happened many a year ago and quit long before TM. My legs burn like they have 2nd degree sunburn while my feet feel as if they are in an ice bucket! The burning, itchy, stingy occurs all over the body for whatever reason. It seems as if everyday its the same but different in different ways. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wednesday, April 8, 2009 8:45:37 AM GMT -05:00 US/Canada Eastern Subject: [TMIC] Re: over heating I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them off a couple of minutes later. Also have a problem with feeling like the top two thirds of my back are on fire. Lynne Verdana Font-Size: -- Quick access to your favorite MSN content and Windows Live with Internet Explorer 8. Download FREE now! 01_header2.gifTHUMBS~1.GIF
Re: [TMIC] Re: over heating
I too feel the same way. I'm forever asking my husband if it is hot or cold in the house. He will tell me and then I figure it is just me feeling hot or cold so I either take off or put on other clothes. The joys of having TM. Heather in Calgary - Original Message - From: jrushton To: CANDIS KALLEY ; tmic Sent: Wednesday, April 08, 2009 7:57 AM Subject: Re: [TMIC] Re: over heating Your words, Candy, are an echo of mine!! You could not have said it better. I was going to send you a note, Lynne, but now there is no need!!Good to have us all start to come out of the woodwork, isn't it? :)) Jeanne in Dayton ---Original Message--- From: CANDIS KALLEY Date: 4/8/2009 10:39:53 AM To: tmic-list Subject: Re: [TMIC] Re: over heating Oh the joys of TM - yes I also have the same problem - our internal thermostats are also affected. Once you go either direction, hot or cold, it seems like forever before it evens out. I don't know how many times I've woke up sweating like a race horse and then the next minute I'm freezing and it takes forever to get back to sleep. I know it's not menopause because that happened many a year ago and quit long before TM. My legs burn like they have 2nd degree sunburn while my feet feel as if they are in an ice bucket! The burning, itchy, stingy occurs all over the body for whatever reason. It seems as if everyday its the same but different in different ways. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wednesday, April 8, 2009 8:45:37 AM GMT -05:00 US/Canada Eastern Subject: [TMIC] Re: over heating I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them off a couple of minutes later. Also have a problem with feeling like the top two thirds of my back are on fire. Lynne 01_header2.gifTHUMBS~1.GIF01_backg2.jpg
Re: [TMIC] Lack of Communication
Funny how this came up. I live in Calgary, 2000 miles from where I grew up in Hamilton Ontario. About a dozen or more of my high school friends get together every May now. Used to be at Xmas every year since 1964, but with age, road conditions they now meet in May. I don't often see these gals but am hoping to get there this year for the little reunion in mid-May. Really looking forward to it as it has been more than 40 years since I have seen some of them. TM or not I plan to get there this year. Hubby staying home so I'm flying solo this time. I have lots of family there too and miss them all terribly. Hugs, Heather in Calgary - Original Message - From: Jan Hargrove To: Janice ; tmic ; jrushton Sent: Wednesday, April 08, 2009 10:28 AM Subject: Re: [TMIC] Lack of Communication Jeanne, I understand how great keeping those contacts alive is!! I've become much more active with my class affairs since tm came to stay!! TM let's you know what's really important in life!! My class has had our 50th reunion, so you see how very important those times together are...actually, even with tm I'm not the worst off...and we loose more as the years go along! Those of us who live in town, and anyone who can get here, meet once a month at the pizza parlor one of our class owns, and boy, I promise I go even if I have to be carried in (LOL)!! if you're not there, you fair game for subject matter!! I'm so happy to be able to be with my friends and that includes my tm friends!!! janh Stillwater, OK --- On Wed, 4/8/09, jrushton jrush...@columbiaenergyllc.com wrote: Hi, Jan, It looks like we TMer's are back in business with all of the notes going back and forth and your temp. problem is one of the main subjects right now! I'm so glad we're back in business as I miss you all when we take our 'naps' as we do off and on. I'm off to stay with my little Sis for a couple nights so we can meet up with my big Sis and go to our monthly '60's Chicks' luncheon in Grandview which is where we graduated from. All Grandview 'chicks' no matter what year they graduated try to meet and we have lunch, chat for a couple hours and off we go. It is really a special time as we have all learned how special life is and is not to be taken for granted. Some we haven't seen since graduation or longer. Take care, all! Jeanne in Dayton ---Original Message--- Hey Guys!!! Sounds like everyone is really ready for SPRING!I am really ready to dig my hands into the dirt and get my flower pots ready for summer.I can't plant in the ground anymore, but I sure go nuts with my pots!We have already planted pansies and they are looking great. Won't be long for spring. Got another question for you all. Do you have a problem with all of a sudden getting too hot - and no one else is? It isn't hot flashes, had a complete hysterectomy over 20 years ago. This just started since TM (2007). My doc has given me patches of clonidine. You change it every week and it does help - doesn't cure it, but it helps. I am dreading warm, humid weather because that is when it is the worst. We live in Missouri and the summers get pretty warm and humid.But we keep our house pretty cool in the winter too.I really notice it when I am more active. What about you all? I have only been on the site a couple of months, but I really miss your chatting when it is quiet.I know every one of us has a lot to deal with, some more than others. But, when we are emailing, we are all on level ground and getting to know the real person, not just the TM person. I have many friends, but I count myself very fortunate to have found you all. Janice
Re: [TMIC] Re: over heating
Janice, I get that and never know when it will hit me either. I start to sweat. A lot of the times it turns out I need to take the time to sit in the bathroom as my bowels are trying to work. Sometimes that works and soemtimes it doesn't. TM is such a mystery to us all. We are like snowflakes (notice I did not say flaky) as we have similar symptoms but no two of us are exactly alike Heather - Original Message - From: Janice To: jrushton ; CANDIS KALLEY ; tmic Sent: Wednesday, April 08, 2009 7:49 PM Subject: Re: [TMIC] Re: over heating You all are describing more of a painful heat, but what I feel is more like a menopause heat flash - but it lasts longer, and it makes me very weak and light headed.Anyone else feel that way? Janice - Original Message - From: jrushton To: CANDIS KALLEY ; tmic Sent: Wednesday, April 08, 2009 8:57 AM Subject: Re: [TMIC] Re: over heating Your words, Candy, are an echo of mine!! You could not have said it better. I was going to send you a note, Lynne, but now there is no need!!Good to have us all start to come out of the woodwork, isn't it? :)) Jeanne in Dayton ---Original Message--- From: CANDIS KALLEY Date: 4/8/2009 10:39:53 AM To: tmic-list Subject: Re: [TMIC] Re: over heating Oh the joys of TM - yes I also have the same problem - our internal thermostats are also affected. Once you go either direction, hot or cold, it seems like forever before it evens out. I don't know how many times I've woke up sweating like a race horse and then the next minute I'm freezing and it takes forever to get back to sleep. I know it's not menopause because that happened many a year ago and quit long before TM. My legs burn like they have 2nd degree sunburn while my feet feel as if they are in an ice bucket! The burning, itchy, stingy occurs all over the body for whatever reason. It seems as if everyday its the same but different in different ways. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wednesday, April 8, 2009 8:45:37 AM GMT -05:00 US/Canada Eastern Subject: [TMIC] Re: over heating I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them off a couple of minutes later. Also have a problem with feeling like the top two thirds of my back are on fire. Lynne 01_header2.gifTHUMBS~1.GIF01_backg2.jpg
Re: [TMIC] Re: over heating
Janh, I like that. We are a living puzzle. Good thinking. I'm sure there are other ailments in this world that people with them feel the same way. I guess a lot of conditions, especially ones that are not so common resemble puzzles. Also by looking at some of the different websites that are up and running, I wonder if there are more people now with TM or are we just finding each other because of the internet?? Heather - Original Message - From: Janice To: jmh1...@sbcglobal.net ; lynnemye...@yahoo.com ; tmic-list Sent: Wednesday, April 08, 2009 7:53 PM Subject: Re: [TMIC] Re: over heating Jan, I did not know, but it makes sense, that you only sweat above the point of paralysis.Do you get to feeling weak when you get too hot?And, does it come over you all of a sudden, sometimes for no reason? Janice - Original Message - From: Jan Hargrove To: lynnemye...@yahoo.com ; tmic-list Sent: Wednesday, April 08, 2009 10:28 AM Subject: Re: [TMIC] Re: over heating The only thing I was told that I would not regain, is my temperature!! My legs which were paralyzed, feel hot on the inside and freezing on the outsidethus phrase freeze/burning...I cannot stay out in heat too long because I can sweat only above my point of paralysis (t8) and heat stroke is possible sooner than normal folks would be affected..I can't complain tho', cause as the saying goes, just look around and you'll see someone worse off..at one time there was a fellow in group who sweat only on one side of his face and his max time sitting under tree in Arizona was 5 minutes!! TM has given so many varieties of ailments that no two of us suffer alikeit's like living the life of a puzzle!!! My 2¢ worth janh Stillwater, OK --- On Wed, 4/8/09, lynne myers lynnemye...@yahoo.com wrote: I don't know about anyone else but I have had problems with over heating since TM hit. Seems like I am constantly putting on and taking off clothes. Don't remember the last time I was able to crawl into bed and snuggle down under the covers without having to throw them off a couple of minutes later. Also have a problem with feeling like the top two thirds of my back are on fire. Lynne
Re: [TMIC] Yes- News on Jude
Patti, Thanks so very much for the update on Jude. Great news. Wow a regular room. That is wonderful. We must keep sending our thoughts and prayers their way. Hugs, Heather in Calgary - Original Message - From: ptpatti200...@aol.com To: tmic-list@eskimo.com Sent: Saturday, March 21, 2009 12:40 PM Subject: [TMIC] Yes- News on Jude Great news. Jude is in a regular room - not intensive care! She is not taking phone calls today, because it is too tiring to talk, but I was able to talk with Dave and get an update. She was in surgery for 4 hours yesterday and didn't get to her room until 9:00PM. The hospital no longer lets family members go into the recovery room with patients due to infections so Dave didn't see her until she was moved to her room. He said they did a lot of cutting - the same as they had been shown on a diagram. I asked how Jude can lay now. Dave said she has a top-of-the-art air mattress with vibration and she will continue to lay on her back, because Jude cannot lay on her stomach unless she is on a respirator. (They had her on her stomach during surgery with a breathing tube.) Dave is a night-owl due to the shift he worked before retiring and his body is still! on that old schedule so I didn't want to call him too early, but he said it would have been OK today. Jude called him at 8:00AM to ask him to bring her glasses, because she couldn't see anything. Go Jude! I have been checking the computer for updates as have the rest of you, because my sore-throat kept me from seeing Jude in person. Jude is expected to be in the hospital for seven to ten days. This is the hospital information: McLaren Hospital Room 659 Bed 1 401 S Ballenger Rd Flint, Mi 48502 I asked Dave to tell Jude that the list has been begging for news and that people are sending their love from all over. He said he'll pass that on to her. Dave was on his way home to rest, but knows he will talk with her again today. Blessings to all and continued prayers for Jude and Dave Patti - Michigan -- Job Hunting? Start with the companies that posted job openings this week.
Re: [TMIC]
Janice, I have the temperature problem as well. I cannot tell hot or cold water on my left leg. My right leg has some sensation regarding the water temps but I still do not trust that feeling when it comes to the hot or cold water. I always have to start my shower get the temperature regulated priot to stepping into the shower. Since I am not affected by TM in my arms I always test the water temps with my hands and arms. I have had this since day one back in year 2003. Not quite sure what it is you mean by 'buzzing' in your legs. My buzzing would refer to the constant pins and needles pain I feel in my legs. And no that has not gone away either. I did not have it the first little while but once I was able to start learning to walk again etc then this pain started and has been my constant companion. Using Gabpentin/Neurontin is the only thing that tempers the pain so it is tolerable. Heather in Calgary - Original Message - From: Janice To: transverse myelitis Sent: Saturday, March 21, 2009 3:15 PM Subject: [TMIC] This is Janice - yet again with another question. It has been 2 years since the onset of TM. From the top of my ribs to my toes I can not tell water temperature on my skin. I have to be very careful with taking my showers.Do any of you have that? I am wondering if it is something that will eventually go away or if it is something I will live with. Also, one improvement I have just noticed lately is the constant buzzing that I had in my legs as soon as feeling started coming back. Did you all have that and have any of you also lost it? Thanks again, Janice
Re: [TMIC] Re: How goes it??
Frank,
Oh my goodness. Had no idea you were so badly injured. Surgeries like that
will certainly take a while to heal and understandable that you have not
written. Hope you heal fast and completely.
Now will have to use the right hand to hold the Margaritas or whatever is
your choice of liquid refreshment.
{{Hugs}}
Heather in Calgary
- Original Message -
From: fr...@franksheldon.com
To: mother...@gmail.com
Cc: tmic tmic-list@eskimo.com
Sent: Friday, March 20, 2009 2:16 PM
Subject: [TMIC] Re: How goes it??
Just wondering how things are going...
Trudy,
I thought I wrote an email before going to the hospital, so many days ago.
I just was released, am home, and recouping from all the surgeries to my
left hand, wrist, radius ulna (bones in forearm) and Elbow.
Typing is very difficult so will write more tomorrow
F
Re: [TMIC] Judes Update
Dearest Jude, I'm so glad you have written. I have not spoken with Patti for over a week. I see she is planning to visit you before you go to hospital for surgery. I will catch up from her then. Please know you are in my thoughts and prayers as you go into this surgery. We are all here for you always. With Luv 'n Hugs, Heather in Calgary - Original Message - From: alle...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, March 17, 2009 2:58 PM Subject: [TMIC] Judes Update Hello Dear Ones, Why is there no mail in my mailbox? Have you all gone to that Face place? Are you at Yahoo? Can't I count on anyone any more? All I did was go into the hospital for a few days and when I get back, everyone seems to be gone. The List is like a ghost town... I would like to thank those of you who have taken the time and effort to send me lovely cards and beautiful notes. I will cherish them for a long time. The hospital is a lonely place and a card with well wishes goes a long way towards making the time pass a bit faster. Also, thank you to those of you who have called me to wish me well and to let me know I have been missed. You have no idea what you people mean to me. I hate naming names because I am afraid of leaving someone out, my memory is getting worse by the hour. So, I am not going to do that. You know who you are and how much I appreciate your signs of friendship...you keep me able to look at life as a glass half full, if you know what I mean. As some of you know, I have no family except for my wonderful husband, Dave. We moved miles away from our home town because Dave wanted property and shortly after I was stricken with TM...no chance to make friends with anyone. Like all of us, I was grasping at straws, trying to find something to give me a reason to live, something to hold on to. Finding this site, thanks to Jim Lubin, became my lifeline. You people became my family and I had somewhere to go where people understood what I was going through, how my life had done a 360' and in a heartbeat I didn't know who I was, where I fit in, if I even was worthwhile to life itself. Each and every one of you has given me a reason to continue living. You make me think, you make me lol, you make me feel warm and comforted when I'm in pity party mode. You graciously allow me to make mistakes and don't hold it against me, and I know that I can count on you to hold me up when I get too tired to tread water any longer. This Friday I go in for flap surgery on the ulcers on my behind. The plastic surgeon is not certain where he is going to find extra tissue to create the flap so the outcome is up in the air. He is going to shave the bony protubences of the ischeal tuberosities way down so that there will be less of a chance for them to penetrate the skin in the future. The research I have done online has not been optimistic. It sounds like in many cases the sites open back up in a relatively short period of time. And, I did not realize that complications due to pressure sores is the number one cause of death in paraplegics. In the future, my job will be to force myself to eat lots of protein and learn to move around when I'm sitting to allow freedom of blood flow and maintain oxygenation in the blood. No matter how hard I am being hugged around my abdomen, I have to find a way to eat. I don't know how to do that though. Dave and I are drinking those new fruit flavored protein waters which are supposed to be an excellent source of the good stuff. And they taste great, not all thick and gooey like Ensure and those kinds of drinks. I am overtired and cannot go to sleep. Things keep rolling around in my head...like what has happened to the List. As hard as Jim Lubin works, even though he is a quadriplegic, to keep this thing going and as much gumption it must have taken him to even begin a web site for us forsaken TM'ers, is absolutely amazing and I for one, will not jump ship for some site where supposedly the grass is greener. Maybe I will be here all by myself, though I know better, but that's ok because through you, my friends and family, I have learned to value myself again, know how to reach out for help when I need it, and I even understand how being a paraplegic has made me a better person, put things in the right perspective, humbled me just a bit. So, to those of you who make me laugh and have given life and hope to one lost old woman, thank you again. Hoping and Praying to wake up after surgery, Jude -- Feeling the pinch at the grocery store? Make meals for under $10.
Re: [TMIC] When God
Phranque,
Since you are a retired MDmaybe you have a special Dr. friend who
could diagnose you then sip martinis 'with' you as part of the 'cure'...
I know Gilly is busy with her family these last couple of days or I'm certain
she would be chiming in here with her special bit of wisdom as well.
{{Hugs}}
Heather in Calgary
- Original Message -
From: Trudy Ogilvie
To: frank @ franksheldon. com
Cc: tmic
Sent: Sunday, March 15, 2009 8:28 PM
Subject: Re: [TMIC] When God
Tomorrow morning I will count up the results and take the winning advice-
doctor ( with X-Ray), martinis, physiotherapy, no rugs, or foot drop apparatus.
pH,
It is now 10:20 p.m. EDST and I was hoping to find out the results of the
voting!
Ah, is it the Ides of March that makes you hesitant We would never, ever
betray you my friend. Tho you most definitely think differently than most of
us...You have a very endearing quality.
Anxiously awaiting your decision. :)
Trudy
Is there a prize
On Sat, Mar 14, 2009 at 5:18 PM, frank @ franksheldon. com
fr...@franksheldon.com wrote:
I am so sorry about the arm!
Voting will continue till 9pm EDST tonight, March 14.
Tomorrow morning I will count up the results and take the winning advice-
doctor ( with X-Ray), martinis, physiotherapy, no rugs, or foot drop apparatus.
Sleep well
pH
Re: [TMIC] When God
Phranque, Get thyself to the doctor. Pronto. Heather in Calgary - Original Message - From: fr...@franksheldon.com To: kimr1...@bellsouth.net; tmic-list@eskimo.com Sent: Saturday, March 14, 2009 7:42 AM Subject: Re: [TMIC] When God When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen. Either He'll catch you when you fall, or He'll teach you how to fly! Well, I must have a different god. Several days ago, my left toe ( foot drop on left side) caught the rug and I went flying. I foolishly put out my left arm ( my bad arm) and landed on my left hand with a crunch. My hand and arm hurt, but then they always hurt. So I go on about my life till the next morning when I notice my left hand is very swollen, but the pain is not too bad if I don't move any part of my left hand. I hide my hand through the day, elevate the hand above my heart and everything gets better, but the swelling comes back when I lower my arm. My left hand is almost useless at the best of times. It is numb, has neuropathic pain, the fingers don't work, has severe allodynia and has slight swelling. So it is not much worse than before the accident. People tell me to go to the doctor who will send me for an X-ray which may show a fracture which will need to be treated ( Surgery? Pins? Cast? all with potential problems). So, What do you think I should do? Thanks, pH
Re: [TMIC] When God
Hi Trudy, I'm using the WalkAide in a 3 yr Clinical Trial. Fortunately for me it helps. There is 'NO WAY' that I will be climbing hills etc (I too watched that video). But, it does help my leg feel less tired after shopping, walking etc. My right leg (the one with foot-drop) does not turn to the outside hence giving me reprieve from the pain of bursitis in the front part of my right hip. I was taking shots of cortisone for that every 6 months. My right foot points ahead now instead of to my right side. Fortunately I was tested and re-tested to see if the electrodes properly stimulated my peroneal nerve before they enrolled me in this clinical trial. I am almost at one year now (in May). Hope to continue using it for the 3 years and beyond. I do agree with the pricing though. It is expensive. Here it would cost $4500.00 to buy. However, with this Clinical Trial I only had to pay $500.00 as the rest is covered by the trial. For this I am so grateful. Not everyone is eligible to use this device. It depends on whether or not the connection is still there with the peroneal nerve. At least that is how I understand it. I was only the 3rd of 13 people who were tested at the time I started this trial that it worked for. Out of the 9 people in this particular clinic who are in the trail there are only 2 of us who wear it continually during the day. Not that big a percentage. I agree with you about Phranque and his martinis too though. LOL Hugs, Heather - Original Message - From: Trudy Ogilvie To: fr...@franksheldon.com Cc: tmic Sent: Saturday, March 14, 2009 8:51 AM Subject: Re: [TMIC] When God Frank I am so sorry about the arm! Honestly, when I fell on my knee I was in a wheelchair for 3 months, like we don't have enough problems. You mentioned footdrop. I tried one of those devices (the Walk Aide and the Bioness 11300) I was really impressed. It actually lifted up my foot. Takes a bit of stimulation but the nerves get the message. It is expensive and it didn't work for me. My friends saw the woman on MSNBC who was able to climb hills after she used this device, I got all these phone calls... they were so sure this was the answer for me.. Now, after trying it out I have to e-mail all of them and say, Not for me!!! I know they're going to feel worse than I do. ! Tho I did find an excellent physical therapist so that's good... Well, it's always nice to hear from you and I mean that sincerely. Now as far as what you should do... my recommendation: cut back from 3 martinis down to 2... I know how hard that's going to be... I mean, I couldn't do it... but maybe you can. Take care! Trudy On Sat, Mar 14, 2009 at 9:42 AM, fr...@franksheldon.com fr...@franksheldon.com wrote: When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen. Either He'll catch you when you fall, or He'll teach you how to fly! Well, I must have a different god. Several days ago, my left toe ( foot drop on left side) caught the rug and I went flying. I foolishly put out my left arm ( my bad arm) and landed on my left hand with a crunch. My hand and arm hurt, but then they always hurt. So I go on about my life till the next morning when I notice my left hand is very swollen, but the pain is not too bad if I don't move any part of my left hand. I hide my hand through the day, elevate the hand above my heart and everything gets better, but the swelling comes back when I lower my arm. My left hand is almost useless at the best of times. It is numb, has neuropathic pain, the fingers don't work, has severe allodynia and has slight swelling. So it is not much worse than before the accident. People tell me to go to the doctor who will send me for an X-ray which may show a fracture which will need to be treated ( Surgery? Pins? Cast? all with potential problems). So, What do you think I should do? Thanks, pH 982.gif
Re: [TMIC] update granddad
She is beautiful Wim, Lucky parents and grandparents. Hugs from Heather in Calgary - Original Message - From: wim from holland To: TMIC Sent: Tuesday, March 10, 2009 4:58 AM Subject: [TMIC] update granddad I'll try again. On this photo she had the same pose as we saw her on a photo in the womb. Vingers in het mouth and a hand besides her head. The first time I sended more but they did not came trough. Wim from Holland -- Plan je feest, nodig mensen uit en deel je foto's met Windows Live Events
Re: [TMIC] granddad
Congratulations Wim I'm a grandma too and it has surely helped me deal with TM knowing I have these two little ones to look forward to seeing all the time. Hugs to you and your wife Heather in Calgary - Original Message - From: wim from holland To: TMIC Sent: Thursday, March 05, 2009 5:30 AM Subject: [TMIC] granddad Just a short note from Holland. My oldest son has become a father, so I am a grandfather now. It felt like I had my own child again in my arms. She is the most beautifull girl I have ever seen since my own daugther. Here name is Tess. This little sunshine I like to share it with all of you. Life is so much nicer to live now, it is more a rich feeling I ever could inmagine. Wim from Holland -- Ook nieuwsgierig naar de nieuwe Messenger? Download 'm hier
Re: [TMIC]
You are in the right place Janice Heather in Calgary - Original Message - From: Janice To: transverse myelitis Sent: Wednesday, March 04, 2009 6:19 PM Subject: [TMIC] This is a test for correctness of address.Please reply.
Re: [TMIC] anniversary
Mindy, None of us really celebrate this do we. However, I never seem to forget that particular day and mine is now 5 1/2 yrs. I hope you have a good day regardless of TM. Heather in Calgary - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Sunday, March 01, 2009 9:45 PM Subject: [TMIC] anniversary today is my 2 year anniversary of contracting TM. Mindy the Artist
Re: [TMIC] Is anybody there??
Jeanne, Am here. This site has been very very quiet. Maybe everyone is just trying to stay warm. Bring on spring. Heather in Calgary - Original Message - From: jrushton To: tmic Sent: Thursday, February 26, 2009 10:05 AM Subject: [TMIC] Is anybody there?? rosy_hint.gif
Re: [TMIC] Aussie Members
Gilly is fine and so is Shirley. Heather in Calgary - Original Message - From: Jan Hargrove To: tmic-list Sent: Saturday, February 14, 2009 4:21 PM Subject: [TMIC] Aussie Members Has anyone heard from our Aussie members since the fires hit Australia? My geography IQ of Australia is at least -100, thus I don't know if any of our membership lives in or near the areas of the fires. If any one hears, please pass the word on to the list. Thanks, janh
Re: [TMIC] Today's thought
Kim, I'm so glad that things worked out so well for you. We do have to remember that not everything that happens to us has something to do with TM. Heather - Original Message - From: kimr1...@bellsouth.net To: Pieter and Heather ; TMIC Sent: Monday, February 09, 2009 6:36 PM Subject: Re: [TMIC] Today's thought Went back to work last wedensday, The company I work for does not have disability so i cut the recovery time from 6 weeks to 5 days. I feel really good and nerosurgen said the surgery had nothing to do with my TM but I am now able to put more pressue on my right leg when I use my walker! so thngs just keep getting better! Thanks for asking! -- Original message from Pieter and Heather pieterheat...@shaw.ca: -- Kim, That is such a good saying. How are you doing since your surgery? Hugs, Heather in Calgary - Original Message - From: kimr1...@bellsouth.net To: TMIC Sent: Monday, February 09, 2009 4:00 PM Subject: [TMIC] Today's thought February 9,2009 Miracles are of all sizes. And if you start believing in little miracles, you can work up to the bigger ones.
Re: [TMIC] Be my strength
AOL EmailDearest Jude, You are in my thoughts and prayers especially as you go into this surgery. You have such a gift for saying just the right things. You should be an author. You can count on me to be there for you always. Hugs to you and to Dave as well, Heather (in Calgary) - Original Message - From: heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Monday, February 09, 2009 12:15 PM Subject: [TMIC] Be my strength Wow...how difficult it is for some of us to keep smiles on our faces and thanksgiving in our hearts. With the loss of loved ones, family strife, difficulties out of our control, lurching, falling, not walking at all and the pain and agony of TM it is a miracle to find ourselves within a group of people with arms long enough to stretch around each and every one of us. It seems as though we all believe in something larger than ourselves. We are strong in our personal faiths and each one of us has a place within this group. If even one of us leaves the List, something is lost forever. When a new member joins, something is gained. We are stronger yet. I must apologize for the times that I have been out of commission and not there for those of you that are in need of comfort. Please know that even though I may not be writing to the List, you are all, my brothers and sisters, in my Prayers...Always. Know that in your heart of hearts and may it help to know that I am still there for you. When I am at my lowest, I take such comfort in knowing that you are there for me. You hold me up, clear my head, help me with the pain while I wait for the next shot of morphine. Your love lifts me up, your Prayers and thoughts keep me strong and I know that I am not alone. Some of you call regularly, some send cards and pictures, others send flowers and a couple of you that live nearby, even visit in person. One of you stands by me Praying and Singing Hymns even when I cannot join you. Know my thanks is true. I will shortly be going through a surgery that I am not feeling comfortable about. I have thoughts of not making it through. I need you to help me. I worry about the infection spreading even stronger throughout my body and blood. I am not yet ready to die. Thank you all for being my lifeline. I am counting on you to send your Prayers up to God in Heaven in the name of His Son, Jesus Christ. It does not matter if you do not believe...I will believe for both of us. Thank you for your help. I am scared and need your strength. Give me only the energy you can spare. I love you. I am not going to be writing much but if you need me, let me know. Jude A Good Credit Score is 700 or Above. See yours in just 2 easy steps! -- A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
Re: [TMIC] Today's thought
Kim, That is such a good saying. How are you doing since your surgery? Hugs, Heather in Calgary - Original Message - From: kimr1...@bellsouth.net To: TMIC Sent: Monday, February 09, 2009 4:00 PM Subject: [TMIC] Today's thought February 9,2009 Miracles are of all sizes. And if you start believing in little miracles, you can work up to the bigger ones.
Re: [TMIC] TV program extra
TV program extraRob, I think Marieke (Canada's Support Group leader) will hopefully chime in here. She takes the Botox shots in her legs every 3 or so months. It really helps her. She has done this for about a year or so now. Heather in Calgary - Original Message - From: Robert Pall To: tmic Sent: Thursday, January 29, 2009 5:53 AM Subject: [TMIC] TV program extra I saw on the TV show Extra a woman who takes Botox every 4 months into her legs to help relieve the spasticity caused by MS. Has any of you tried Botox and if so with what results. Rob in New Jersey
Re: [TMIC] Today Show
Trudy, I have a device similar to the one shown on the Today show. The one on the show is by Bioness. The one I am using is called a WalkAide. It is a different company and looks a bit different. My device if I had to purchase it would cost me $4500. However, I am in a 3 year Clinical Trial that is being run here in Alberta Canada. I only had to pay $500. For me it helps lift my toes and is strengthening my ankle. I have been using it since May of 2008. There is no way I could climb mountains etc but I can now walk much better and somewhat faster. I still use my cane when I am out and about even with this device. However, I am not as afraid of tripping anymore. The biggest thing I find is that my leg is definitely not as tired when I am walking. The clinic I go to now has only 9 people using it. There are actually 2 of us with TM using it. The others either have MS or have had a stroke. When I was first tested to see if I was a candidate they had to be able to find the peripheral nerve in the leg to see if there was still 'communication' between it and my lower leg. If that nerve connection is not there then you are not a good candidate. When I was tested last spring I was only the 3rd (at that time) out of 13 people they had tried the testing with. So not everyone can use it. In the beginning it felt like I was being stabbed by a darning needle every time the electrode stimulated my leg. I wondered what I had gotten myself into. However, after a couple of weeks we finally found the right spot and now it just feels like a sort of 'river of sensation' (the only way I can explain it) down my leg from the point of stimulation to the ankle. It does not hurt. The settings go from zero to 8. The best setting for me is at 4. Each person is different. I know that there are clinical trials for this device called the WalkAide in certain States in the USA. In Canada, Alberta is the only province at present who is trialing this device. I feel very fortunate to be part of the trial and very happy that I was able to use it. I no longer have that pain in my hip from 'hip-hiking' that required me to have cortizone shots every 6 months or so for the pain. I'm not sure if my ankle will be strengthened or 'trained' in 3 years but it would be lovely it that happens. Heather in Calgary - Original Message - From: Trudy Ogilvie To: Tmic-list@eskimo.com Sent: Tuesday, January 27, 2009 11:06 AM Subject: [TMIC] Today Show Please take a look and tell me what you think?? Click on the woman with the MS story to tell.. http://today.msnbc.msn.com/
Re: [TMIC] Sill up night 3
So good to hear from you Kim. Hoping that the pain relief from the morphine stays away when you have to go home. Keep us posted. Heather in Calgary - Original Message - From: kimr1...@bellsouth.net To: tmic-list@eskimo.com Sent: Sunday, January 25, 2009 1:59 AM Subject: [TMIC] Sill up night 3 Well it looks like I am 2 for 2 with the whole sleep thing, it’s now Sunday 4:00am went t bed at 1:00 same as yesterday. So I am beginning to tell that sleep is so over rated! LOL. Took the Ambian at 10:30 with Morphine and here 3 hours later wide awake!, I think I need to sneak out of here hit one of the bars up for “Happy Hour” sneak back in and maybe get 6 hours sleep? LOL! Hoping to see the Nero Surgeon today and he tells me I can go home. Once I have word on what’s going on I will be sure to pass on! Thanks again for all the support!!! Kim
Re: [TMIC] Lyrica
Regina, I have been on Gabapentin for 51/2 yrs now. Started at 3200mg/day now down to 2400mg/day divided into 600mg 4 times per day. Early Dec. 2008 I tried the Lyrica at 600mg per day divided into 2 doses of 300mg in a.m. and p.m. After 10 days I had to call neuro and go back to the Gabapentin. My lower legs and feet started to swell very badly. Since there is heart and high blood pressure problems in my immediate family I did not want that problem. It was difficult to put on shoes and walk when so swollen. The pain relief was terrific though compared to the Gabapentin. So after the 10 days I was switched back to the Gabapentin. Took a while for all the swelling to go down. Talk to your neuro. Sometimes the adverse effects outweigh the good of the Lyrica. That was my findings anyway. Hugs, Heather in Calgary - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Sunday, January 25, 2009 5:44 AM Subject: [TMIC] Lyrica My neuro now tells me that my symptoms are caused by much more than TM. Namely vasculatis. She put me on Lyrica and I woke up this AM with a pretty nasty headache. Should I put up with this and it will pass? What were your problems or successes with Lyrica? R
