Re: [TMIC] Happy New Year

[Pat Cooley]

eHappy New Year to you.  I find the TMIC web site is never real busy
anymore.  It seem everyone has gone over to the Face Book groups


On Tue, Dec 31, 2013 at 9:48 AM, fatimah shehadeh <
fatimah.sheha...@gmail.com> wrote:

> Happy new year to all.
> Tima
>
>
> On Tue, Dec 31, 2013 at 9:00 AM, Nikki Macleod wrote:
>
>> Hi everyone just a quick message to wish you all a very happy new year
>> and best wishes for 2014. I hope you all had a lovely Xmas and have managed
>> to avoid any health problems. I've noticed it's been rather quiet but I
>> expect everyone is so busy at this time of year.
>> Best wishes,
>> Nikki
>> UK.
>>
>> Sent from my iPhone
>>
>
>

Re: [TMIC] December Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE CHRISTMAS BABIES.


On Mon, Dec 2, 2013 at 7:57 AM, Barbara H.  wrote:

> Happy birthday to those celebrating in December!
>
> 12-2 Meghan (bluemeg...@hotmail.com)
>
> 12/2 Ashlee Black (tracey.bl...@hnoins.com)
>
> 12/3  Janice (jannic...@gmail.com)
>
> 12-3 Wim from Holland (wim_from_holl...@hotmail.com)
>
> 12- 4 Jan Burgess (ja...@rogers.com)
>
> 12-7 Patti in Wisconsin (patticoole...@gmail.com)
>
> 12-8 Lori Malloy (jorlcummi...@earthlink.net)
>
> 12-15  Alton Ryder(a-ry...@comcast.net)
>
> 12-18 Rod Jenke (rktje...@chariot.com.au)
>
> 12/23 Roger Pratt (r.c.pr...@frontier.com)
>
> 12-25 Gilly (Also gillycl...@yahoo.com.au, and trinketgi...@gmail.com), (
> mingalett...@activ8.net.au)
>
> 12-27 (subers...@msn.com)
>
> 12/31 Janet (j.d...@shaw.ca)
>
>

Re: [TMIC] October Birthdays

[Pat Cooley]

HAPPY BIRTHDAY SEPTEMBER BABIES.  I HOPE YOU HAVE A WONDERFUL DAY.


On Tue, Oct 1, 2013 at 1:33 PM, Barbara H.  wrote:

> Happy Birthday to those celebrating in October!
>
> Please send any additions or corrections to tmic-list@eskimo.com
>
> 10-3-97  Lauren Graham (grahamsn...@aol.com)
>
> 10/4 Neil McNeil (n...@hotmail.com)
>
> 10-7 Naomi (ladyno...@aol.com)
>
> 10/08 Rudy Aceves (race...@vengrp.com )
>
> 10/9 Assunta Rene (robert...@hotmail.it)
>
> 10/11  Lori B. (lbieh...@earthlink.net)
>
> 10-11  Kate  (nicwi...@cox.net)
>
> 10-12 Diana Gray (graymyfat...@aol.com)
>
> 10/14 Marieke Dufresne! (marieke...@hotmail.com)
>
> 10/14 Lanora (noni...@hotmail.com)
>
> 10/16 Sandy Parker (parkersw...@aol.com)
>
> 10/16 Linda Cherpeski (cherp...@msn.com)
>
> 10-21 Renee A. in CT (littlem...@aol.com)
>
> 10-21 Cody Kidwell (c...@austin.rr.com)
>
> 10/21 Candy K (cakal...@embarqmail.com)
>
> 10-23 Keith (leboo...@cfl.rr.com )
>
> 10-25 Debby Jones (ladybutl...@comcast.net)
>
> 10-26 Jim Lubin (jlu...@eskimo.com)
>
> 10-26 Bernie Pelow ((bpe...@austin.rr.com)
>
> 10/27 Robin (moldr3...@aol.com)
>
> 10/27 Krissy (ladykri...@comcast.net)
>
> 10-28 Netta Ganor (net...@isdn.net.il)
>

Re: [TMIC] Re: TM & Exhaustion

[Pat Cooley]

Jude I am with you.  I have such fatigue that all I want to do is go to
bed.  There are times when I know I should go potty but I don't have the
strength to go.  Or the times I would like a drink of water, but again I
don't have the energy.  I am not one to nap but lately I find that I am
laying down in the afternoon. No I am not looking forward to winter.  I
hate the cold.  The best time of the day is when I can crawl under the
covers and get warm.  The fatigue seems to be so much worse this year.
Maybe it is because I am getting older.

Keep warm Jude.  TMID


On Wed, Sep 18, 2013 at 12:51 PM,  wrote:

> **
> Hi Friends,
>
> Are any of you suffering with exhaustion?  I am so tired all of the time
> that I can't stand it.  What do you do to rid yourself of this malady?
>
> I hope that you have had a nice summer and you are looking forward to a
> beautiful fall.  Winter will soon be here and it will be freezing cold here
> in Michigan.  How does your TM make you feel in the cold weather?
>
> I love you,
> Jude
>
>
>

Re: [TMIC] September Birthdays

[Pat Cooley]

Happy birthday to all the September babies, especially to our friend Pam.
 Pam we all miss you so much.  TIAD


On Sun, Sep 1, 2013 at 8:08 PM, Barbara H.  wrote:

> Happy Birthday to those born in September!
>
> Please send any additions or corrections to tmic.l...@eskimo.com.
>
> We also want to take a moment to remember Pam Montz, faithful list member
> who passed away a few years ago. Her birthday was 9/9.
>
> 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com )
>
> 09-06 Jake DeGrand (judidegra...@yahoo.com)
>
> 9-8 Mary Davidson (keebe...@aol.com)
>
> 9/8 Terry Parker (parkersw...@aol.com)* *
>
> 9/12  R. J. Rankin (rj_ran...@yahoo.com)
>
> 9-16  Mary Eden Cochran (coch6...@bellsouth.net)
>
> 9-17 Bill Wimberly- (*bwimbe...@bellsouth.net*)
>
> 09/20 Rob Pall (robthe...@aol.com)
>
> 9-23 Karen  (Mushroo) (mush...@juno.com)(*mushr...@hotmail.com*)
>
> 9-24  Suzi in Seattle *(ss1...@aol.com*)
>
> 9/26 Allen Rucker *a...@allenrucker.com*
>
> 9/30 Patti Enstrom (pge...@aol.com )
>
>

Re: [TMIC] August Birthdays!

[Pat Cooley]

Happy birthday to all August babies.


On Thu, Aug 1, 2013 at 7:39 AM, Barbara H.  wrote:

> Happy Birthday to the August kids! August is one of our biggest birthday
> months.
>
> Please send any additions or corrections to:
>
> 8/1 Peachi (pkeene2...@aol.com)
>
> 8/1 Cindy McLeroy (cindymcle...@socal.rr.com)
>
> 8-1 Stacy Firth (safi...@dow.com )
>
> 8-3 Larry Throne (lbthr...@hotmail.com )
>
> 8-10 Sean Indiveri (sindiv...@hotmail.com)
>
> 8-11 Raylene Gökeri (mrs_gok...@yahoo.com
>
> 8-11 Michelle Maricic (mmari...@aol.com)
>
> 8/11 Dalida S. Ortiz de Garcia (py...@yahoo.com)
>
> 08/17 Sandra (Harth) Brassil (sbras...@aol.com)
>
> 8-17 Kim (jnks...@huntel.net)
>
> 8-19 Saroj (sarojkumar...@gmail.com)
>
> 8-21 Barbara H. (barbara...@gmail.com)
>
> 8-23-00 Cole (neilandwe...@rogers.com)
>
> 8-29 Kathleen (kathleen.kar...@gmail.com)
>
> 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
>
>
>

Re: [TMIC] Friends

[Pat Cooley]

I agree completely.  My family and close friends know that I will never be
cured and no longer ask those stupid questions.  To people who don't have a
clue and ask how I am doing, I always say "I am doing the best I can", and
that usually shuts them up.


On Sat, Jul 6, 2013 at 2:28 PM, Susan Kleinz  wrote:

> amen Iris.  I do the exact same thing.  I also hate being told I look
> good, when I am in excruciating pain.  This ™ has ruined my life, and I'm
> pissed!
> On Jul 6, 2013, at 6:06 AM, I.WHIDDETT  wrote:
>
> >
> > Nikki, just been reading Dalton's words and I totally agree with his
> response to "how are you".  I always say "fine".   This is partly for the
> reason he gives but also because I learnt early on that it is impossible
> for any non- TMer to understand our symptoms - certainly unlike anything
> they will ever have experienced - and I'm all out of patience in trying to
> explain.  By far the most aggravating question to be asked is "Are you
> better now?"!
> >
> > Iris
> >
> >
> >
>
>

Re: [TMIC] July Birthdays

[Pat Cooley]

I wish all the July babies a very HAPPY BIRTHDAY!


On Sun, Jun 30, 2013 at 8:51 PM, Barbara H.  wrote:

> Happy Birthday to the July kids!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 7-5 Sumer (fjs181...@aol.com)
>
> 7/5 Richard Ashford 
>
> 7-14 Julie (chi...@cox.net)
>
> 7-24 Kevin Weilacher (hwyfli...@yahoo.com)
>
> 7-25 Peggy Wilson (pwi1991...@aol.com)
>
> 7-25 (jennapa...@aol.com)
>
> 7-27 Linda (lp...@aol.com)
>
> 7/30 Dex Packard (d...@centurytel.net)
>
>

Re: [TMIC] June Birthdays

[Pat Cooley]

Happy birthday to al the June babies.


On Sat, Jun 1, 2013 at 12:20 AM, Barbara H.  wrote:

> Happy Birthday to the first-of-summer kids! Hope you have a great day!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> We also remember those with birthdays from this month who have passed on
> Tom Carr (6/2) and Dennis Galvin (6/25).
>
> 6-1 Akua (a...@artfarm.com)
>
> 6-5 Tobe Kanon (spirita...@verizon.net)
>
> 6/11 Marabeth (mes...@earthlink.net)
>
> 6-11 Sharon Marsden (dorightra...@yahoo.com)
>
> 6-17 Cheryl (rn11...@yahoo.com)
>
> 6-19 Tom in Delaware (t-...@usa.com)
>
> 6-19 Debbie Capen (dnca...@gmail.com )
>
> 6-22 Ann Moran (annmo...@gofree.indigo.ie)
>
> 6-22 Gerry (suret...@sympatico.ca)
>
> 6-24 Lynne (lynnemye...@yahoo.com)
>
> 6-25 Errol White (eamjwh...@bigpond.com )
>
> 6-28 Kim Harrison (kimharrison...@comcast.net)
>
> 6-29  Pauline (prha...@aol.com)
>
> 6/30 Bobby Jim (elbobber...@earthlink.net)
>
>
>
>
>

Re: [TMIC] whats going on?

[Pat Cooley]

Bernie I tried to e-mail Robert, but it wouldn't go through.


On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (S&FS) <
bernie.butc...@honeywell.com> wrote:

>  I got you here in sunny Long Island Rob!
>
> ** **
>
> *BERNARD BUTCHER*
>
> *Honeywell Engineering*
>
> *516-577-5868*
>
> *From:* Robert Pall [mailto:robthe...@aol.com]
> *Sent:* Thursday, May 16, 2013 12:49 PM
> *To:* tmic-list@eskimo.com
> *Subject:* [TMIC] whats going on?
>
> ** **
>
> I just received an email starting I was dropped from this list due to
> excessive bounced emails. I have no idea what this is about as I do not
> send that much in...and to the best of my knowledge I have never had an
> email bounced.
>
> Rob in New Jersey
>

Re: [TMIC] whats going on?

[Pat Cooley]

Robert I also received your post.


On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (S&FS) <
bernie.butc...@honeywell.com> wrote:

>  I got you here in sunny Long Island Rob!
>
> ** **
>
> *BERNARD BUTCHER*
>
> *Honeywell Engineering*
>
> *516-577-5868*
>
> *From:* Robert Pall [mailto:robthe...@aol.com]
> *Sent:* Thursday, May 16, 2013 12:49 PM
> *To:* tmic-list@eskimo.com
> *Subject:* [TMIC] whats going on?
>
> ** **
>
> I just received an email starting I was dropped from this list due to
> excessive bounced emails. I have no idea what this is about as I do not
> send that much in...and to the best of my knowledge I have never had an
> email bounced.
>
> Rob in New Jersey
>

Re: [TMIC] Re: Check spam folders for mail from eskimo.com -TMIC

[Pat Cooley]

Jude I check my spam folder everything I go into my e-mail.  No e-mails
from TMIC goes into my spam folder.  I have been getting all the e-mails
from TMIC with no problem.

Patti - Wisconsin   TIAD


On Fri, May 3, 2013 at 10:53 AM,  wrote:

> **
> Hello All,
>
> It's me again.  I just want to mention again that it's important for
> everyone to check their spam folders for email from TMIC, because members
> from the quad list, instead of unsubscribing from the list, told their mail
> providers that their mail from eskimo.com was spam.  So now a lot of our
> mail is going into our spam folders.
>
> That was one of the reasons I wrote last time, but I don't think I made it
> clear enough.  So make sure you check your spam folders for more mail you
> might be missing out on.
>
> And, if you have any ideas about how to change what's happening, let me
> know, because I'll do whatever I can to help the list.  I want to keep on
> hearing from everyone.  Even though it is only about 13 of us that are
> still mailing to the list.
>
> I don't know what to do about getting more people back on the list.  And,
> one more thing...if anyone has an address for Patti Voorheis, will you
> please send it to me?  I really need to contact her, but my mail keeps
> coming back as not delivered.
>
> Thank you very much,
> Jude H.
> TIAD
>

Re: [TMIC] Re: Attention -The TMIC List

[Pat Cooley]

Yes I use it


On Thu, May 2, 2013 at 3:46 PM, Janice Nichols wrote:

>   Sorry I am late to respond.Maybe we could ask all who read/respond
> to our website to let us know by just stating a “yes” or “no” to whether or
> not they are still a part of us.
>  We do need to have some idea who is still getting our emails. Would
> you all please do so?
> Janice
>
>  *From:* heyjude48...@aol.com
> *Sent:* Tuesday, April 30, 2013 8:38 PM
> *To:* tmic-list@eskimo.com
> *Subject:* [TMIC] Re: Attention -The TMIC List
>
>  Hi  Everyone,
>
> How are you doing tonight?  It's Jude Hoops and I am writing to let you
> know that eskimo.com may be having a problem with our emails.  It seems
> that some of the people who don't want to receive mail are telling AOL that
> our mail is Spam instead of just unsubscribing to the list.  It is because
> of their negligence that we may not get any more emails.
>
> This list has been around for at least 12 years and I don't know how long
> before I signed on that it had been up and running.  I know the Quad list
> is going to another site, but I haven't heard anything about us.
>
> Does anyone else know anything about this?  If you do will you please let
> me know.  I'm very worried about it.  I know that the list doesn't function
> the way that it used to but it is still important to me that we all stay in
> touch.
>
> Oh, do any of you have the list of May Birthdays?  It usually comes around
> before the 1st and I haven't seen it yet for this month.
>
> What do you think we should do?  (Again, I don't know if it applies to us
> too, or just the Quad list)
>
> And one other thing, do any of you mind  if I use Pam's sign off of TIAD?
> I just can't seem to help myself, it just keeps her alive in my heart.
>
> TIAD,
> Jude Hoops
> Michigan
>

Re: [TMIC] May Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE MAY BABIES.


On Tue, Apr 30, 2013 at 10:06 PM, Barbara H.  wrote:

> I apologize for being late with these - my husband had a detached retina
> yesterday, and we've been spending time at different doctors offices, then
> he had surgery today. It's been a whirlwind. It didn't even click that this
> was May 1 til I saw Jude's note. But thankfully we didn't miss anyone since
> no one's birthday was on the 1st.
>
> Happy Birthday to all the May kids! Please send any additions or
> corrections to tmic-list@eskimo.com.
>
> We also remember this month Jim Belz, May 11, who has passed away.
>
> 5/5 Linda Garrett  (limoga43...@yahoo.com)
>
> 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com)
>
> 5-11 Lynn (roseofr...@aol.com)
>
> 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com)
>
> 5/31 Wendy Wood (ww...@optonline.net)
>
>

Re: [TMIC] Re: Transverse Myelitis

[Pat Cooley]

I have idiopathic TM.  No known cause except that I did have singles ober
20 yrs ago, and I also had chicken pox as a child.TM came over a 2 day
period - on saturday I noticed my balance wasn't right, and later in the
day I felt I had an UTI and went to urgent care and was given drugs.  The
next morning during my shower I noticed I had trouble lifting my right leg
over the tub.  After the shower while trying to put on my underwear, I wet
my pants twice.  Then all of a sudden my legs went out and down on the
floor I went.  I was rushed to the ER, and after about 8 hrs and a spinal
tap and MRI was diagnosed with TM.  Spent 4 weeks in rehab and finally was
able to walk with a walker, then a cane.  I still have bladder/bowel
problems like most of us.  The only drugs I am on are oxyticbutin for my
bladder and a low dose of a sulfer drug 50 mg at night.  I don't have the
severe pain like so many of us; just burning/freezing and bee stings in my
feet.  It will be 5 yrs for me in June.  I hope this is what you need.


On Fri, Apr 26, 2013 at 10:09 PM,  wrote:

> **
> Hi Everyone!
>
> It's Jude Hoops.  I was just reading the quad list and they are talking
> about their injuries at what level they are injured, how it happened and
> when it happened.  Do you think that that would be something we could do
> too?
>
> I think it might be interesting to know how we were all injured or got
> sick and how long ago it was.  We've all been on this list for a long time
> now and I was wondering whether any of us had gotten any better over the
> years.
>
> Let me know what you think.  Just write a small paragraph about how you
> came to have TM, what level your injury is at and if you have seen any
> improvement over the years.
>
> I love you all so much and have been thinking of you.
>
> Hugs,
> Jude (TIAD)
>

Re: [TMIC] Hello

[Pat Cooley]

Welcome Dee Jay.  I am sorry to hear about your being hit again with
another attack.  I pray that improvement will come to you soon.

Patti in Wiscconsin


On Sun, Mar 31, 2013 at 9:05 PM, dee jay  wrote:

> Hello everyone.  My name is Anne and I have just joined your group.  I was
> diagnosed with TM in 1975, completely recovered, and then 23 years later
> here I am confined to a wheelchair/hospital bed and will be for the rest of
> my life.  I hae just started experiencing this "banding" and have so many
> allergies to medications even the doctor does not know what to do.  Any
> help would be appreciated.
>

Re: [TMIC] April Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE BIRTHDAY BABIES!


On Mon, Apr 1, 2013 at 9:51 AM, Barbara H.  wrote:

> Happy Birthday to those born in April! Please send any additions or
> corrections to tmic-list@eskimo.com.
>
> We also remember three who had birthdays this month who have passed on:
> Ken (kenoliver...@hotmail.com) was on April 1, Jeron Rampersad (
> rumc...@hotmail.com) on April 3, and Doc (doc...@insightbb.com) on April
> 24.
>
> 4/10 Marie Dipietro deer...@aol.com
>
> 4/18 Bernard Butcher (bernie.butc...@honeywell.com)
>
> 4/20 Dianna (carg...@cs.com)
>
> 04/20 Todd Tarno (toddtm2...@sbcglobal.net)
>
> 4/21 Robert Diehl (sawmil...@verizon.net)
>
> 4-25 Shelia (sc...@aol.com)
>
> 4-29 Dalton H. Garis (malugss...@gmail.com)
>
>
>
>

Re: [TMIC] March Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE MARCH BABIES.  I HOPE YOU ALL HAVE A GREAT DAY!

On Sat, Mar 2, 2013 at 11:18 PM, Barbara H.  wrote:

> Happy Birthday to the March kids!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> And please join me in remembering Mike Hammond, whose birthday was 3/8,
> who passed away a few years ago.
>
> 3-3 Marsha Scholes  (marshab...@comcast.net)
>
> 03.05 Bettie Imus (bettie5...@aol.com)
>
> 3-7 Sue Mattis (bobsue6...@adelphia.net)
>
> 3-15 Sandra Melville (luth...@comcast.net)
>
> 3-17 Joy S. (joyst...@aol.com)
>
> 3-19  Betty Clark (beecl...@aol.com)
>
> 3/24 john h (JOHNLOVESKARAOKE)
>
> 3/26 Jane Elrod (celr...@aol.com)
>
> 3/30 Gary (gbthomas8...@sbcglobal.net)
>
> 3-31 Jan H (jmh1...@sbcglobal.net)
>
>
>

Re: [TMIC] Unidentified subject!

[Pat Cooley]

Hello to you.  I hope you are having a great day.

Patti

On Sun, Feb 10, 2013 at 10:23 AM, Anne Shreve  wrote:

>   Hello!
>
> http://twistoys.com/thy/6vphpoeu65?gwk0
>
>

Re: [TMIC]

[Pat Cooley]

I found it on the internet.  It looks as though is comes as a jam as you
spread it on your toast.  The cost was around $26.00 and one jar is
supposed to last a month.

Patti - Wisconsin




On Sun, Feb 3, 2013 at 10:33 AM, fatimah shehadeh <
fatimah.sheha...@gmail.com> wrote:


> Janice,
>
> you can order it online at:
>
> http://fruiteze.com
>
> Fatimah
>
>
> On Sun, Feb 3, 2013 at 12:34 AM, Gary Thomas 
> wrote:
>
>
>> **
>> Janice,
>> What is it and where is it found (store section)?
>> Gary
>>
>> - Original Message -
>> *From:* Janice Nichols 
>> *To:* tmic 
>> *Sent:* Sunday, February 03, 2013 12:25 AM
>> *Subject:* [TMIC]
>>
>>  For those of you who have a constipation problem, I read tonite on FB
>> that “Fruiteze” is supposed to be really good.
>> Just thought I would throw that out there.
>>
>> Janice
>>
>>
>

Re: [TMIC] February birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL YOU FEBRUARY BABIES.  HAVE A GREAT ONE.

PATTI IN WISCONSIN

On Fri, Feb 1, 2013 at 12:49 AM, Barbara H.  wrote:

> Happy Birthday to those born in February!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 2-1 Jeanne Rushton (jrush...@columbiaenergyllc.com)
>
> 2/2 Ursula (uma...@t-online.de)
>
> 2/2 Lisa in TN (lsim...@aol.com)
>
> 2-5 Tita in Delaware (t-...@usa.com)
>
> 2-6 Barbara Alma (balmat...@aol.com)
>
> 2-7 Barbara in Texas (babbsie1...@yahoo.com)
>
> 2/11 Mary (mster...@yahoo.com )
>
> 2-11 Deb Casey (casey...@myway.com)
>
> 2/15 Jill (jillybean60...@yahoo.com)
>
> 2-17 Joan Fink (2-17 mafi...@yahoo.com)
>
> 2/26 Patti - Michigan (pjv1...@chartermi.net)
>
> 2/27 Cindy (rdavi...@san.rr.com)
>
>
>

Re: [TMIC] Our Memories

[Pat Cooley]

Janice I agree with you.  I wil try the gamehouse web site.  For years I
have played game at www.pogo.com but it is always good to try new things.
I will give it a try.

Patti - Wisconsin

On Sat, Jan 26, 2013 at 10:41 PM, Janice Nichols wrote:

>   Thanks.I will definitely try it!
> Janice
>
>  *From:* Betty Clark 
> *Sent:* Saturday, January 26, 2013 6:35 PM
> *To:* Janice Nichols 
> *Cc:* heyjude48...@aol.com ; tmic-list@eskimo.com
> *Subject:* Re: [TMIC] Our Memories
>
>  If you've never seen them before, there are many on-line games on "
> gamehouse.com" that can help with memory... my personal favorite is Super
> TextTwist. It is a really good game you can play by yourself. You're given
> six random letters and have to make as many 3-6 letter words as you can in
> a given amount of time. They show you how many words of each number of
> letters can be made and as long as you get at least one of the 6-letter
> words, even if you don't get the rest, you pass on to the next series of
> letters. As the clock runs out, it shows you the words you missed, so it
> helps you learn words (and spelling). It's keeps a running score until you
> fail to get a 6-letter word, so you play against yourself to see how high a
> score you can achieve. Here's the link to Super TextTwist:
>
> http://www.gamehouse.com/online-games/super-texttwist-online
>
> Betty
>
> On 1/26/2013 3:18 PM, Janice Nichols wrote:
>
>  I do have memory problems.   Not just forgetting names of things, but
> situations that happened a week ago, or the day after I see a movie,
> I forget what it was.Eventually I think of it, but it is scary for my
> husband to be talking about an incident, and I don’t remember it.
>
> We have a card game we play with another couple that is called Quiddler.
> You start with 3 cards and work up to having 10 cards dealt to you.
> You make words out of your cards dealt to you or discarded by others.   It
> does make you think and it is very addicting.   We love it.
> Janice
>
>  *From:* heyjude48...@aol.com
> *Sent:* Friday, January 25, 2013 9:55 PM
> *To:* tmic-list@eskimo.com
> *Cc:* heyjude48...@aol.com
> *Subject:* [TMIC] Our Memories
>
>  *How is your memory these days?  Have you experienced memory loss?  If
> so, how does it affect your life?  Does your faulty memory affect your life
> with your loved ones?  *
> **
> *Memory loss has to do with the myelin sheath.  The myelin sheath coats
> the neurons in the spinal column to cement memories.  TM destroys the
> myelin sheath, so that our memories become clouded or we have no memories
> at all.*
>
> *The more we repeat things we need to remember, the thicker the layer of
> myelin forms around the neurons.  Brain games such as Scrabble, Seduki,
> Boggle, Crossword Puzzles,and other games help us to reform the myelin
> sheath...*
>
> *Any thoughts on this?*
>
> *Many hugs,*
> *Jude*
>
>
>

Re: [TMIC] Tonight, Today, Tomorrow

[Pat Cooley]

For me TM came 4-1/2 yrs ago.  At that time, I had no health problems and
was still working part-time which is what I wanted.  In 2 days time, with
TM I was unable to walk.  After 6 weeks in rehab, I was able to use a
walker and after 7 months was able to go back to my part-time job.  I
enjoyed the interaction with the people.  I missed being able to go
shopping and doing the everyday things.  About 3 yrs ago, we relocated 150
miles away to be near my daughter and her family. Of course, I had to give
up my part-time job.   With TM and getting older, we thought it would be
best to have family close.  Believe it or not, I miss many of the things we
did around the house.  It was even difficult to use the vacuum because I
have terrible balance.  I miss being able to work in the yard.  The house
we bought has 8 acres of land and I can't even walk it to see what it looks
like.  I hate the fatigue after doing the simplest chore around the house.
I miss being able to run in and out of the store to get something.  It is a
chore to get out of the car and walk into the store.  I know it is simple
things that I complain about, but to me it is a big thing to have to depend
on other people.  I have it so much better than a lot of us, but it still
po's me.  Boy when I re-read this, I sure sound like a complainer, which I
guess I am.  I don't want to complain around my family so I guess you are
all my shoulder to cry on.

Patti in Wisconsin
On Sat, Jan 26, 2013 at 11:10 AM, Linda Egli  wrote:

> I lost a wonderful job working in a local Public Health Department.  I had
> worked there for 12 years & loved every minute of the job.  I went to the
> doctor with severe numbness & loss of motor function, I then saw a neurologist
> & after  a 36 years as a nurse, my career was over. I left work that day &
> was never able to return - very hard to deal with & probably  took 2-3 yeas
> to finally accept.
> I miss dancing; I was not the greatest but I enjoyed it.
> The main thing I miss now is only having partial use of my hands.  About 2
> years into TM I developed essential tremors in both hands (especially the
> right hand & I am right handed).  I take Primidone but it really doesn't
> help a lot. The main thing that helps the tremors is alcohol & I can't
> drink every 4-6 hours, (but some days I try).  Between the severe numbness
> & tremors, using my hands can be difficult.  I had always enjoyed sewing,
> needlework, crocheting, scrap booking, & just anything involving arts &
> crafts.  I got rid of 95% of my craft & sewing items because I could not
> stand not being able to use them (I had a whole room for crafts).  I have
> found I can do jigsaw puzzles - the 3-D ones with larger foam pieces or a
> little crocheting if I keep it at 15 -20 minutes.
> I try to be positive as much as possible, knowing there are many people
> with much worse difficulty than me.  On a good note, I have a
> wonderful supportive husband (helps with laundry & tries to help cooking),
>  good medical coverage, & am able to afford someone in to help with
> the house 3 days weekly.
> Life is what you make of it.
> Linda E.
>
>   --
> *From:* john snodgrass 
> *To:* transverse myelitis 
> *Sent:* Saturday, January 26, 2013 5:44 AM
> *Subject:* Re: [TMIC] Tonight, Today, Tomorrow
>
> i was a work-a-holic
> i sure miss that!
>
>   --
> *From:* "heyjude48...@aol.com" 
> *To:* tmic-list@eskimo.com
> *Cc:* heyjude48...@aol.com
> *Sent:* Friday, January 25, 2013 10:32 PM
> *Subject:* [TMIC] Tonight, Today, Tomorrow
>
>  *Hi everybody,*
> **
> *Tonight, sitting here doing nothing, I'm wondering how Transverse
> Myelitis has affected your life.  What has it stolen from you.  Maybe
> everything, maybe nothing.  I'm sure it is a personal thing.*
> **
> *Some people choose to focus on life and believe that everything in life
> happens for a reason.  *
> **
> *I love life and refuse to let TM steal one minute. Life is made up of
> many joyous moments and I choose to focus on those moments, not TM.  *
> **
> *Because of my love for life, I refuse to feel sorry for myself.  I've
> learned to be outspoken about my TM and I've become a demanding person
> because of TM.  *
> **
> *I hate that I've had to give up driving and remember how it used to feel
> heading down the highway with my arm resting on the window turned all the
> way down.*
> **
> *Always remember that today could be potentially the best day of your
> life.  Never take today for granted.  When you wake up each morning
> remember to thank God for giving you another day.*
> **
> *Always end the day with a positive thought.  No matter how hard thing
> were, Tomorrow is a fresh opportunity to make it better.  (unknown)*
> **
> **
>
>
>
>
>

Re: [TMIC] Fw: What to take to bed with you...Not a Joke!

[Pat Cooley]

Janice I read this before somewhere.  I can't remember where or when.
Thanks for the reminder.

Patti - Wisconsin

On Fri, Jan 25, 2013 at 7:24 PM, Janice Nichols wrote:

>
>
>
>   THOUGHT THIS MIGHT BE A GOOD IDEA FOR ALL OF US.
>   JANICE
>
>*What to take to bed with you - not a joke.*
> *
>
> *
> *[image: keys.jpg]*
> *
> **
>
> **Put your car keys beside your bed at night.**
>
> Tell your spouse, your children, your neighbors, your parents, your Dr's
> office, the check-out girl at the market, everyone you run across. Put your
> car keys beside your bed at night.
>
> If you hear a noise outside your home or someone trying to get in your
> house, just press the panic button for your car. The alarm will be set off,
> and the horn will continue to sound until either you turn it off or the car
> battery dies.
>
> This tip came from a neighborhood watch coordinator. Next time you come
> home for the night and you start to put your keys away, think of this: It's
> a security alarm system that you probably already have and requires no
> installation. Test it. It will go off from most everywhere inside your
> house and will keep honking until your battery runs down or until you reset
> it with the button on the key fob chain. It works if you park in your
> driveway or garage.
>
> If your car alarm goes off when someone is trying to break into your
> house, odds are the burglar/rapist won't stick around. After a few seconds,
> all the neighbors will be looking out their windows to see who is out there
> and sure enough the criminal won't want that. And remember to carry your
> keys while walking to your car in a parking lot. The alarm can work the
> same way there. This is something that
>
> should really be shared with everyone. Maybe it could save a life or a
> sexual abuse crime.
>
> P.S. I am sending this to everyone I know because I think it is fantastic. 
> Would
> also be useful for any emergency, such as a heart attack, where you can't
> reach a phone. My Mom has suggested to my Dad that he carry his car keys
> with him in case he falls outside and she doesn't hear him. He can activate
> the car alarm and then she'll know there's a problem.*
>
>
>
<>

Re: [TMIC] request

[Pat Cooley]

Welcome back Rick.

Patti - Wisconsn

On Fri, Jan 25, 2013 at 2:05 PM, Richard Ashford  wrote:

> Rick-back on list
>
>*From:* Richard Ashford 
> *To:* "tmic-list@eskimo.com" 
> *Sent:* Friday, January 25, 2013 1:51 PM
> *Subject:* [TMIC] request
>
>
>
>
>

Re: [TMIC] Re: Subscribe

[Pat Cooley]

Cindy I have often wondered that since I had singles, does that mean I
can't get it again?  I am afraid to get any shots.  I have been advised not
to

Patti - Wisconsin

On Fri, Jan 25, 2013 at 2:51 PM, Cindy McLeroy wrote:

> **
> If you had chicken pox as a child you should get the shingles vac.
>
> - Original Message -----
> *From:* Pat Cooley 
> *To:* heyjude48...@aol.com
> *Cc:* jan...@centurytel.net ; tmic-list@eskimo.com
> *Sent:* Friday, January 25, 2013 7:20 AM
> *Subject:* Re: [TMIC] Re: Subscribe
>
> Jude I had shingles in 1992.  I don't remember any pain as bad as that,
> even after going through labor 3 times.  The pain I have with TM is child's
> play compared to shingles.  Mine started with pain in the middle of my back
> going up my right shoulder. I thought it was from work as they had just
> installed a whole new area for my work station.  Plus we had a lot going on
> at work and thought it was stress. Also my oldest daughter was causing
> strees and worry.  After 4 days of pain that just got worse, when I out of
> the shower on the 5th day, I noticed red spots on my right side and knew
> right away what it was.  The doctor confirmed it and gave me pain pills and
> some cream.  It did get worse and for the next 4 days I was in a drug haze
> thankfully.  Finally I was able to get up and eat.  The pain off and on
> lasted for months, and the red marks turned into pox like blisters.  It
> took months for it to go away,, but the redness lasted over a year.   I
> know there is a shot to help make the shingles mild but by the time I soon
> the doc it was too late for the shot.  So if anyone suspecs shingles, I say
> get to the doctor asap, it makes a difference.
>
> Pattti - Wisconsin
>
> On Thu, Jan 24, 2013 at 8:04 PM,  wrote:
>
>> **
>> *I didn't know there was a shot for shingles.  My mother had them before
>> she got cancer.  From the way she described it, they were painful and itchy.
>> *
>> **
>> *Jude,*
>> *Michigan*
>>
>>  In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time,
>> jan...@centurytel.net writes:
>>
>> For me, I do not believe it was stress that created TM.   It struck at a
>> great time for us.   We were getting ready to travel, etc., after my
>> husband had been retired for 4 months and really looking
>> forward to our new future.At 4 months of retirement, you-know-who
>> struck and totally changed our lives.   I had had a flu shot  -  but that
>> was 3-4 months before TM.I had not been sick at
>> all for a long time before TM either.I think it is like MS or any
>> other disease like that  -  it hits when it hits.
>> For the first 2 years after TM struck, my doc did not want me to get a
>> flu shot.   But now I get one yearly and he wants me too.   Have also had a
>> shingles shot and pnuemonia shot.   No problems.
>> Janice
>>
>>
>>  *From:* Robert Pall 
>> *Sent:* Wednesday, January 23, 2013 12:56 PM
>> *To:* heyjude48...@aol.com ; i.whidd...@sky.com
>> *Cc:* tmic-list@eskimo.com
>> *Subject:* Re: [TMIC] Re: Subscribe
>>
>> There is a ton of information and personal stories,pictures etc at the
>> T.M.I.C. Internet Club. The reason I like this site is that we talk
>> about TM and the medicines and conditiions we have. I am not looking to
>> make friends (although that is a plus). I just want to share information
>> that may help us cope with this awful condition. As for me I have always
>> believed that the cause of my TM was excess stress which probably caused
>> my immune system to overreact to some minor illness like a summer
>> cold.that being said no doctor can say what caused any of us to have
>> TMI myself decided it was stresseveryone one of us thinks he
>> knows the cause of TM ...but none of us do!
>>
>> All the best and happy to see this site in action once again!
>> Rob in New Jersey
>>
>>
>>
>> -Original Message-
>> From: Heyjude48458 
>> To: i.whiddett 
>> Cc: tmic-list 
>> Sent: Wed, Jan 23, 2013 1:41 pm
>> Subject: [TMIC] Re: Subscribe
>>
>>  *Thanks Iris, I am so happy you are writing.  I am really punishing
>> myself to find topics for us to talk about.  What can you think of that is
>> pertinent toTM?*
>> **
>> *Love you,*
>> *Jude*
>>
>>  In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time,
>> i.whidd...@sky.com writes:
>>
>> Hi Jude
>> I've always wondered if I somehow snuk in under the radar of TMIC.  When
>> I was diagnosed with TM 3 1/2 yrs ago it was all new and

Re: [TMIC] Re: Broken Bones

[Pat Cooley]

I am responding to Janice's question about cold feet.  Yes since TM my feet
feel as though they are encased in ice.  Sometime the cold goes up my leg
to my knees.  They feel so cold they burn.

Patti in Wisconsin

On Fri, Jan 25, 2013 at 10:59 AM,  wrote:

> **
> *Wow, that's a lot of breaks.  Do you also have brittle bone disease like
> I do?  What did you do for the 5 months with a walking boot on it.  I have
> one for my broken leg, but it leaves me with sores on my leg where it rubs
> on it.*
> **
> *Hugs,*
> *Jude*
>
>  In a message dated 1/25/2013 12:55:50 A.M. Eastern Standard Time,
> kimharrison7...@att.net writes:
>
>  I fell last year and broke my leg, ankle, heel and foot. because I can't
> take anything on my feet lucky for me orthor knew about TM and in place of
> surgery he put a "walking boot on it) funny still could not walk  LOL  had
> to wear it for 5 months but when the TM burning started up I could take it
> off for a little while
>
>  --
> *From:* "heyjude48...@aol.com" 
> *To:* kimharrison7...@att.net
> *Cc:* tmic-list@eskimo.com
> *Sent:* Thu, January 24, 2013 10:19:14 PM
> *Subject:* Re: [TMIC] Re: Subscribe
>
> *Kim,*
> *I feel so bad for you that you can't wear socks or anything on your
> feet.  Mine tingle and the toes are broken on my right foot so they hurt,
> but I can still keep my feet warm with socks and leg warmers.*
> **
> *Jude,*
> *Michigan.*
>
>  In a message dated 1/24/2013 10:14:48 P.M. Eastern Standard Time,
> kimharrison7...@att.net writes:
>
>  My *wish* is for someday to be able to wear sock or shoes.. and winter
> is a pain barefoot, but the pain of anything touching my feet is
> unbearable..
>
>  --
> *From:* "heyjude48...@aol.com" 
> *To:* jan...@centurytel.net
> *Cc:* tmic-list@eskimo.com
> *Sent:* Thu, January 24, 2013 9:08:56 PM
> *Subject:* Re: [TMIC] Re: Subscribe
>
> *I am wearing socks and leg warmers right now along with my TED boots
> that hold my feet up in bed.  Plus, I have a sheet and two blankets on, and
> a quilt when I go to bed.*
> **
> *Jude*
> *Michigan*
>
>  In a message dated 1/24/2013 4:46:29 P.M. Eastern Standard Time,
> jan...@centurytel.net writes:
>
> My feet are cold most of the time.   I am assuming that is natural for TM
> -  anyone else?
> Janice
>
>
>  *From:* Kim Harrison 
> *Sent:* Wednesday, January 23, 2013 6:29 PM
> *To:* heyjude48...@aol.com ; jcs...@yahoo.com
> *Cc:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] Re: Subscribe
>
>  Thank you Jude.. our Cheerleader !!
> How is the cold effecting ya'all.. I HATE it... everything stings and
> hurts more and worse is I can not wear sholes for socks so TM legs stick
> and feet are freezing...  anyone else?
>
>  --
> *From:* "heyjude48...@aol.com" 
> *To:* jcs...@yahoo.com
> *Cc:* tmic-list@eskimo.com
> *Sent:* Wed, January 23, 2013 7:24:07 PM
> *Subject:* Re: [TMIC] Re: Subscribe
>
> *I'm happy that you guys are glad to see us active again.  I am working
> my = off to keep us up and running.  Neither Jim Lubin or Sam
> Siegel are interested in doing anything with us anymore so it is just me
> trying like hell to keep things interesting.  However, I am running out of
> ideas to talk about and need your help.  I just got an email today from a
> lady who is interested in joining us, so I sent her the info.  Help!*
> **
> *Jude*
>
>  In a message dated 1/23/2013 5:51:24 P.M. Eastern Standard Time,
> jcs...@yahoo.com writes:
>
>  i wollowed with why and how and the thought came to me,,it doesnt matter
> how or why if i knew,,it would still hurt.
>
>   --
> *From:* Robert Pall 
> *To:* heyjude48...@aol.com; i.whidd...@sky.com
> *Cc:* tmic-list@eskimo.com
> *Sent:* Wednesday, January 23, 2013 1:56 PM
> *Subject:* Re: [TMIC] Re: Subscribe
>
> There is a ton of information and personal stories,pictures etc at the
> T.M.I.C. Internet Club. The reason I like this site is that we talk about
> TM and the medicines and conditiions we have. I am not looking to make
> friends (although that is a plus). I just want to share information that
> may help us cope with this awful condition. As for me I have always
> believed that the cause of my TM was excess stress which probably caused
> my immune system to overreact to some minor illness like a summer
> cold.that being said no doctor can say what caused any of us to have
> TMI myself decided it was stresseveryone one of us thinks he
> knows the cause of TM ...but none of us do!
>
> All the best and happy to see this site in action once again!
> Rob in New Jersey
>
>
>
> -Original Message-
> From: Heyjude48458 
> To: i.whiddett 
> Cc: tmic-list 
> Sent: Wed, Jan 23, 2013 1:41 pm
> Subject: [TMIC] Re: Subscribe
>
>  *Thanks Iris, I am so happy you are writing.  I am really punishing
> myself to find topics for us to talk about.  What can you think of that is
> pertinent toTM?*
> **
> *Love you,*
> *Jude*
>
> 

Re: [TMIC] Internal Thermometer

[Pat Cooley]

Jude I was told when I first got TM that it affects our internal
thermostate.  Our bodies can't adjust to changes of temperature.  For me,
it is the cold.  This tiime of the year I cuddle under my electric throw
most of the day.  The only time I am really warm is at night when I get
under all my blankets.  The heat doesn't bother me very much in the
summer.  I bet you will find that many of us have the same problem -  some
have a hard time with the cold - and some with the heat.

Patti in Wisconsin

On Fri, Jan 25, 2013 at 11:30 AM,  wrote:

> **
> *Hello All,*
> **
> *My internal thermometer is compromised by TM.  I am constantly asking
> Dave to turn up the heat, or turn the heat down.  Does anyone else have
> this problem?*
> **
> *I can't stand it...it has the potential to cause problems in our
> marriage.*
> **
> *Love you,*
> *Judy*
> *Michigan*
> *Dance like no one's watching, Sing like no one's listening, Love like
> you'll never be hurt, Play like there's no winners, Behave like mom's
> watching, Give like you have plenty, and Smile...(unknown"*
>

Re: [TMIC] Re: Subscribe

[Pat Cooley]

Jude I had shingles in 1992.  I don't remember any pain as bad as that,
even after going through labor 3 times.  The pain I have with TM is child's
play compared to shingles.  Mine started with pain in the middle of my back
going up my right shoulder. I thought it was from work as they had just
installed a whole new area for my work station.  Plus we had a lot going on
at work and thought it was stress. Also my oldest daughter was causing
strees and worry.  After 4 days of pain that just got worse, when I out of
the shower on the 5th day, I noticed red spots on my right side and knew
right away what it was.  The doctor confirmed it and gave me pain pills and
some cream.  It did get worse and for the next 4 days I was in a drug haze
thankfully.  Finally I was able to get up and eat.  The pain off and on
lasted for months, and the red marks turned into pox like blisters.  It
took months for it to go away,, but the redness lasted over a year.   I
know there is a shot to help make the shingles mild but by the time I soon
the doc it was too late for the shot.  So if anyone suspecs shingles, I say
get to the doctor asap, it makes a difference.

Pattti - Wisconsin

On Thu, Jan 24, 2013 at 8:04 PM,  wrote:

> **
> *I didn't know there was a shot for shingles.  My mother had them before
> she got cancer.  From the way she described it, they were painful and itchy.
> *
> **
> *Jude,*
> *Michigan*
>
>  In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time,
> jan...@centurytel.net writes:
>
> For me, I do not believe it was stress that created TM.   It struck at a
> great time for us.   We were getting ready to travel, etc., after my
> husband had been retired for 4 months and really looking
> forward to our new future.At 4 months of retirement, you-know-who
> struck and totally changed our lives.   I had had a flu shot  -  but that
> was 3-4 months before TM.I had not been sick at
> all for a long time before TM either.I think it is like MS or any
> other disease like that  -  it hits when it hits.
> For the first 2 years after TM struck, my doc did not want me to get a flu
> shot.   But now I get one yearly and he wants me too.   Have also had a
> shingles shot and pnuemonia shot.   No problems.
> Janice
>
>
>  *From:* Robert Pall 
> *Sent:* Wednesday, January 23, 2013 12:56 PM
> *To:* heyjude48...@aol.com ; i.whidd...@sky.com
> *Cc:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] Re: Subscribe
>
> There is a ton of information and personal stories,pictures etc at the
> T.M.I.C. Internet Club. The reason I like this site is that we talk about
> TM and the medicines and conditiions we have. I am not looking to make
> friends (although that is a plus). I just want to share information that
> may help us cope with this awful condition. As for me I have always
> believed that the cause of my TM was excess stress which probably caused
> my immune system to overreact to some minor illness like a summer
> cold.that being said no doctor can say what caused any of us to have
> TMI myself decided it was stresseveryone one of us thinks he
> knows the cause of TM ...but none of us do!
>
> All the best and happy to see this site in action once again!
> Rob in New Jersey
>
>
>
> -Original Message-
> From: Heyjude48458 
> To: i.whiddett 
> Cc: tmic-list 
> Sent: Wed, Jan 23, 2013 1:41 pm
> Subject: [TMIC] Re: Subscribe
>
>  *Thanks Iris, I am so happy you are writing.  I am really punishing
> myself to find topics for us to talk about.  What can you think of that is
> pertinent toTM?*
> **
> *Love you,*
> *Jude*
>
>  In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time,
> i.whidd...@sky.com writes:
>
> Hi Jude
> I've always wondered if I somehow snuk in under the radar of TMIC.  When I
> was diagnosed with TM 3 1/2 yrs ago it was all new and very frightening and
> I had very little help or info from the doctors.  While looking for help on
> the Internet, I was lucky enough to find the group and finally began to
> understand what had happened but, like most us, not why it had happened!
> So, thanks for taking on board what seems to be a lone voice from the UK
> and for all the kind words of encouragement and advice.  Just to be sure I
> am a "proper" member, my details are:-
>
> Iris Whiddett
> 98  Eastwood Road
> Rayleigh
> Essex   EnglandTel: 01268 771642
>
> Regards
> Iris UK
>
>

Re: [TMIC] neurologist

[Pat Cooley]

Deb you have certainly been through hell.  I am almost embarrassed to
respond to you as I  have complaints like so many of us TMers, but nothing
compared to what you have been through.  I just wanted to say how wonderful
that you have such a caring and responsive doctor.  I wish more of us could
say that. I am so glad that Jude has given the TMICd a new life.  I am on
FB, but sure missed this group.  Hope to see more posts here in the coming
days.

Patti in Wisconsin

On Thu, Jan 24, 2013 at 5:45 PM, Deb Monteleone wrote:

> I see my neurologist every 3 -4 months, as that is a requirement when
> receiving Tysabri infusions for MS.  Blood work is done every 3 months and
> Brain MRI every 6 months, all these are requirements for Tysabri.  It is a
> monthly infusion that can possibly cause a deadly brain infection, hence
> all the follow-up.  It is the only MS medication that truly works the best
> and after doing shots every day for a year with Copaxone I take the chance
> that all the tests would catch the virus before it did damage.
>
> ** **
>
> I do have TM for 4.5 years now, they diagnosed it as being caused by MS.
> My lesion is at T8-10, I believe.  Had to learn to stand, walk, so steps
> again.  Ended up with a cane and walking slower and more unsteady than
> before TM.  I would watch how people walked and especially how they went up
> and down stairs.  My symptoms and pain are pretty much the same as most in
> this group.  
>
> ** **
>
> It definitely makes a difference who your Neurologist is.  Mine diagnosed
> TM about 5-10 minutes after I first walked through his door.  I had 3 days
> of steroid infusions, starting that day (had them stay late for me), then
> oral steroids.  It was a few weeks after that when I lost control of my leg
> muscles.   This time went into his office in a wheelchair and he put me in
> hospital for 5 days of intravenous steroids 3x day, then off to Re-hab for
> few weeks.  Finally home, where I never stopped trying to improve and I
> still concentrate on walking better, etc.  If only the pain would stop I
> could deal with the rest; fatigue, cognitive, unable to do all I did before
> TM.  I am still improving minutely but I can’t stop believing and trying to
> walk normal again and praying that pain reduction would go along with that.
> 
>
> ** **
>
> For me, my Neurologist is like my PCP; I see him, email him when things
> change and he gives me all my meds (which is a lot).  I have constant very
> painful nerve pain in both legs, feet being the worst.  He is a MS
> specialist and the office is a MS Center.  I also get tested for my optical
> nerve, cognitive abilities and my gait once a year.  I feel blessed to have
> my doctor.  He is available by email anytime, including nights, weekends
> and of course by phone during the day and an emergency number.  He listens
> to my symptoms, adjusts meds when necessary and marks any differences in my
> sensations and movements.  
>
> ** **
>
> Seeing my Neurologist on a regular basis also makes me feel secure that
> someone who is very competent and understanding of my condition is watching
> over me and knows my history if God forbid something happens again.
>
> ** **
>
> Wow, didn’t realize all this would come out.  That is what’s great about
> this group; it’s a safe comfortable place to say what you need to because
> you all understand. 
>
> ** **
>
> It’s so nice to have emails from this group again.
>
> ** **
>
> Make it a great day,
>
> Deb
>
> ** **
>
> *From:* Barbara H. [mailto:barbara...@gmail.com]
> *Sent:* Thursday, January 17, 2013 11:33 AM
> *To:* Robert Pall
> *Cc:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] neurologist
>
> ** **
>
> I think it depends on one's needs. I've had TM for 17 years and haven't
> seen a neurologist in about 14 years. I got to an acceptable plateau (can
> walk and pretty well function as a homemaker and volunteer, have some
> issues with fatigue, balance, and muscle spasms. I don't think I could hold
> down a job for various reasons, but I've been able to raise my children,
> keep my home, and help out in various areas at church and my kids'
> schools). I am not on any TM-related medications, so when we moved to
> another state, I didn't seek out a new neuro. It helped that my PCP was
> knowledgeable about TM and willing to refer me to anyone I wanted to see --
> it was through him I was referred to a urologist for problems in that
> realm. If I had problems that only a neuro could help with or was on
> certain medications that it would be best for him to monitor, I'd see one,
> and I'd encourage anyone with any of those needs to keep seeing one, but
> otherwise there is no need to see him every year just to hear that
> everything is the same, which is about where we were when I last saw him.
> Of course, if new problems or questions crop up, I wouldn't hesitate to
> seek one out.
>
> Barbara H.
> http://barbarah.wordpress.com
>
> On Thu, Ja

Re: [TMIC] Re: Need your input

[Pat Cooley]

Hey there is no way any of us can or will be bored.  We are here for each
other.  If you want to rant and rave - go ahead.  We all have those days -
more than we care to admit.  If all you want is to know someone is other
there to talk to - we are here.  Please feel free to say what you want.  We
have to keep the lines of communication open.

Patti in Wisconsin

On Thu, Jan 24, 2013 at 3:36 PM, Janice Nichols wrote:

>   Regina, you would not bore us.   Most of us probably would like to talk
> about the same things anyway.   If anyone is bored, they can delete.  I am
> afraid it is this shyness that has been one of
> the problems with our site.Please feel free  -  everyone!
> Janice
>
>
>  *From:* heyjude48...@aol.com
> *Sent:* Wednesday, January 23, 2013 1:28 PM
> *To:* regina...@sbcglobal.net
> *Cc:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] Re: Need your input
>
>  *So Regina...what are the issues you want to discuss?*
> **
> *Jude*
>
>  In a message dated 1/23/2013 12:29:34 A.M. Eastern Standard Time,
> regina...@sbcglobal.net writes:
>
>   I can think of a lot of issues to talk about.  What holds me back is
> that I don't want to bore anyone.  I'm sitting at my computer, a bit dazed
> because I've taken a small doze of a sleeting pill  as I was shall I say
> the word
>
> --- On *Tue, 1/22/13, heyjude48...@aol.com * wrote:
>
>
> From: heyjude48...@aol.com 
> Subject: Re: [TMIC] Re: Need your input
> To: jan...@centurytel.net
> Cc: tmic-list@eskimo.com
> Date: Tuesday, January 22, 2013, 6:45 PM
>
>  *We really do have a good group.  I'm busting my butt to come up with
> topics to discuss.  Anything that you think of will be appreciated.*
> **
> *Jude*
>
>  In a message dated 1/22/2013 9:23:26 P.M. Eastern Standard Time,
> jan...@centurytel.net writes:
>
>  You know, it sounds like everyone wants to come back to our site here.
> Let’s get back to sharing and responding again.   Also, those questions
> that pop up over time too.   I
> doubt that anyone can go for long without questions about something!
> What a great bunch we have!
> Janice
>
>
>  *From:* 
> rn11...@yahoo.com
> *Sent:* Monday, January 21, 2013 6:43 PM
> *To:* tmic
> *Subject:* Fw: [TMIC] Re: Need your input
>
>  I have had a flu shot every year for over 25 years. Also had a pneumonia
> shot.
> See my PCP every 3 months; he takes care of my meds.
> I am having a lot of bone pain from my metastatic breast cancer that I
> will speak with my oncologist about when I see her in February. Trouble is
> the treatment also causes bone pain.
> I hate facebook!
> Miss the old TMIC group.
> Cheryl
>
>  - Forwarded Message -
> *From:* Robert Pall 
> *To:* heyjude48...@aol.com; snow121...@hotmail.com
> *Cc:* tmic-list@eskimo.com
> *Sent:* Monday, January 21, 2013 6:52 PM
> *Subject:* Re: [TMIC] Re: Need your input
>
> I have taken the flu shot for the past 15+ yearsnever got the
> flu.and I do not believe getting TM had anything to do with any kind
> of immunizations. I also see my regular MD twice a year minimum and he
> does prescribe most of my meds. However I see my neurologist at least once
> per year to insure that I am up to date with the best pain killers and
> meds available This year he is doing a baclofen injection into my spine
> to see if a baclofen pump will be beneficial and he also prescribed 2 oz
> per month of marijuana which I know is beneficial
>
> Finally I would love to see this list get busy again.I hate going on
> facebook!
>
> Rob in New Jersey..
>
>
>
> -Original Message-
> From: Heyjude48458 
> To: snow121100 
> Cc: tmic-list 
> Sent: Mon, Jan 21, 2013 3:03 pm
> Subject: [TMIC] Re: Need your input
>
>  *Hi Carol,*
> **
> *Thank you for answering me...I'm trying to rev up the TMIC list again.
> Anything you want to know or questions you need answered please email me.
> It's important that you write in from time to time.*
> **
> *Love you,*
> *Jude*
> *Michigan*
> **
> *Learn from yesterday, Live for today, Hope for tomorrow.*
> *  Albert Einstein*
>
>  In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time,
> snow121...@hotmail.comwrites:
>
> Hey Jude!
> I have received a flu shot every year, except the first year, after the
> onset of TM.  I became sick in June 2005.  I have not noticed any
> complications.  I think we all have to figure out the pros and cons.  I
> have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years
> old).  Yes, 6!  I had 2 bypasses in 2 of the arteries.  I don't know about
> now, but then I was told it would be better to make 2 shorter graphs than 1
> longer one.  Anyway, along with my doctors, my daughter an RN and my
> son-in-law a doctor, I have made the decision to get flu shots annually and

Re: [TMIC] Facebook

[Pat Cooley]

I AGREE COMPLETELY DALTON.

PATTI

On Wed, Jan 23, 2013 at 10:09 AM, Dalton Garis  wrote:

> For my situation, I don't need Facebook;
>
> But i see that for the young they really like to send pictures to each
> other.
>
> WE, on the other hand, grew up READING things rather than VIEWING things,
> and that is the difference.  We read and the younger set views.  It is
> WORDS ON A PAGE for us, but for the younger set they IMAGE more.
>
> dg
>
> Dalton Garis
> Flushing, Queens
> New York, USA
> (718) 838-0437
>
>

Re: [TMIC] Re: Need your input

[Pat Cooley]

Janice I just love to see the posts from here. I am on FB like so many of
us.  I enjoyed it at first, but there is so much needless posting and takes
so long to go everything until you get something about TM that helps.  I am
a pet lover, but get tired of looking at all the cute animal posts that
have nothing to do with TM.  I don't believe I will leave FB, but would
like to see more posts here from people.  I miss the people who didn't go
to FB.

Patti in Wisconsin


On Tue, Jan 22, 2013 at 8:23 PM, Janice Nichols wrote:


>   You know, it sounds like everyone wants to come back to our site
> here.   Let’s get back to sharing and responding again.   Also, those
> questions that pop up over time too.   I
> doubt that anyone can go for long without questions about something!
> What a great bunch we have!
> Janice
>
>
>  *From:* rn11...@yahoo.com
> *Sent:* Monday, January 21, 2013 6:43 PM
> *To:* tmic 
> *Subject:* Fw: [TMIC] Re: Need your input
>
>  I have had a flu shot every year for over 25 years. Also had a pneumonia
> shot.
> See my PCP every 3 months; he takes care of my meds.
> I am having a lot of bone pain from my metastatic breast cancer that I
> will speak with my oncologist about when I see her in February. Trouble is
> the treatment also causes bone pain.
> I hate facebook!
> Miss the old TMIC group.
> Cheryl
>
>  - Forwarded Message -
> *From:* Robert Pall 
> *To:* heyjude48...@aol.com; snow121...@hotmail.com
> *Cc:* tmic-list@eskimo.com
> *Sent:* Monday, January 21, 2013 6:52 PM
> *Subject:* Re: [TMIC] Re: Need your input
>
>
>
> I have taken the flu shot for the past 15+ yearsnever got the
> flu.and I do not believe getting TM had anything to do with any kind
> of immunizations. I also see my regular MD twice a year minimum and he
> does prescribe most of my meds. However I see my neurologist at least once
> per year to insure that I am up to date with the best pain killers and
> meds available This year he is doing a baclofen injection into my spine
> to see if a baclofen pump will be beneficial and he also prescribed 2 oz
> per month of marijuana which I know is beneficial
>
> Finally I would love to see this list get busy again.I hate going on
> facebook!
>
> Rob in New Jersey
>
>
>
> .
>
>
> .
>
>
>
>
>
>
>
>
>
>
> -Original Message-
> From: Heyjude48458 
> To: snow121100 
> Cc: tmic-list 
> Sent: Mon, Jan 21, 2013 3:03 pm
> Subject: [TMIC] Re: Need your input
>
>
> *Hi Carol,*
> **
> *Thank you for answering me...I'm trying to rev up the TMIC list again.
> Anything you want to know or questions you need answered please email me.
> It's important that you write in from time to time.*
> **
> *Love you,*
> *Jude*
> *Michigan*
> **
> *Learn from yesterday, Live for today, Hope for tomorrow.*
> *  Albert Einstein*
>
>  In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time,
> snow121...@hotmail.com writes:
>
> Hey Jude!
> I have received a flu shot every year, except the first year, after the
> onset of TM.  I became sick in June 2005.  I have not noticed any
> complications.  I think we all have to figure out the pros and cons.  I
> have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years
> old).  Yes, 6!  I had 2 bypasses in 2 of the arteries.  I don't know about
> now, but then I was told it would be better to make 2 shorter graphs than 1
> longer one.  Anyway, along with my doctors, my daughter an RN and my
> son-in-law a doctor, I have made the decision to get flu shots annually and
> pneumonia vaccine every 5-7 years as recommended.
>
> When I lived near Chicago, my neurologist was Dr. Joy Derwenskus at
> Northwestern where she was also an associate professor.  Now that I live
> closer to Indianapolis, I see Dr. Margaret Frazer, in Carmel.  She is with
> JWM Neurology and also works in research.  As much as you can enjoy a
> doctor, I have enjoyed seeing both of them.  I see no fault with them just
> get exasperated with all the unknowns of TM.
>
>
>
>
>
> *Carol *
> Worrying does not empty
>
> tomorrow of its troubles;
>
> It empties today of its strengths.
>
>
>
>
>
>  --
> From: heyjude48...@aol.com
> Date: Mon, 21 Jan 2013 11:53:38 -0500
> Subject: Need your input
> To: samm...@fidmail.com; ginnahamil...@yahoo.com; k...@col.gen.nz;
> xring...@mwt.net; snow121...@hotmail.com; grace...@gmail.com;
> w2sm...@aol.com; r...@aol.com; thenavigato...@aol.com
> CC: tmic-list@eskimo.com; heyjude48...@aol.com
>
>
> *Hi ladies and gentleman,*
> **
> *This is Jude from TMIC.  We are having two discussions and need your
> input.  First, we are talking about the need for a neurologist when someone
> has TM, and the other topic is the need for flu shots, have you had them
> and what does your Dr. say about them.*
> **
> *There has been quite a bit of activity lately, but we need more.  Will
> be happy to answer any questions you have or talk about any topics you can
> t

Re: [TMIC] Re: [TM-HA] Where is everyone? There used to be a lot of...

[Pat Cooley]

I am still here and have been on TMIC lately.  I hope to see more of us in
the future.  I am on FB but prefer TMIC.

Patti in Wisconsiin

On Tue, Jan 22, 2013 at 1:42 PM, rn11...@yahoo.com wrote:

> I never left the tmic site but most moved to facebook. I hate facebook and
> wish everyone would come back. I miss them.
> Cheryl
>
>   --
> *From:* Judith Gail Hoops 
> *To:* TM-HA 
> *Sent:* Tuesday, January 22, 2013 2:32 PM
> *Subject:* [TM-HA] Where is everyone? There used to be a lot of...
>
>  Judith Gail Hoops posted in 
> TM-HA
> [image: Where is everyone? There used to be a lot 
> of...]Judith
> Gail 
> Hoops2:32pm
>  Jan 22
> Where is everyone? There used to be a lot of people here every day. Are we
> so jaded that we have nothing to talk about? Would you mind dropping in at
> TMIC? We are down to 13 members and need more input on the topics we are
> "talking" about. The address is: tmic-list@eskimo.com and to sign up you
> need to first send an email to tmic-list-requ...@eskimo.com, with the
> word Subscribe in the space under the address in the topic line. I love
> you. ♥
>
> View Post on 
> Facebook·
>  Edit
> Email 
> Settings·
>  Reply to this email to add a comment.
>
>
>

Re: [TMIC] Need your input

[Pat Cooley]

Betty I have the same home situation.  I never get the shot, but my hubby,
both my daughters. my 2 son-in-laws and 2 grand daughters get the shot.
Since I don't go out much at this time ofl the year - too damn cold - I
feel I am safe.  Even before TM, I never had colds.

Patti C in Wisconsin

On Mon, Jan 21, 2013 at 1:28 PM, Betty Clark  wrote:

>  My neuro feels my primary can cover my meds needs regularly so unless a
> new problem or question arises, there's no need for me to pay a specialist
> just to say, "Okay, you're doing fine, see you next year," since I already
> see my primary every 1-2 years anyway.
>
> He also recommended I not get any vaccinations - but I think there are
> additional considerations to make... I have no small children or
> grandchildren (little germ critters, lol) and I live in the very mild
> climate area just north of San Francisco, California. In the 6 and a half
> years I've had TM, I've only had two colds and never had the flu (knock on
> wood!). Even though my daughter, who is 21 and still lives at home, just
> recovered from a pretty awful case of the flu, no one else in the house got
> it (me, my husband or my 23-yr-old son). Besides which, my understanding is
> there are many different strains of flu out there and the shot does not
> cover them all. There's no guarantee, even if you get the shot, you won't
> get the flu.
>
> Maybe the mega doses I take of vitamins B-12, C and D3 help, I don't know.
> But I'm more comfortable risking the flu than another TM incident.
>
> Betty
> (in Northern California)
>
> On 1/21/2013 9:05 AM, Pat Cooley wrote:
>
> Jude since everyone with TM suffers in different ways, I believe the
> decision to have a flu shot should be an individual one.  I have had 2
> different neuros and they both recommend that I don't have any shots in the
> future, so I haven't and will not have one in the future.  I mentioned that
> I have had 2 different neuros.  The first is from when I was first dx with
> TM, and now the second because we moved too far away from the first.  It
> has been 2 yrs since I last saw my current neuro as she said I did not need
> any more MRI's as I have had at least 5 since TM.  Also I did not need to
> make any appt unless things changed or have different symptoms which they
> haven't.
>
> Patti C. - Wisconsin
>
>  On Mon, Jan 21, 2013 at 10:53 AM,  wrote:
>
>>  *Hi ladies and gentleman,*
>> **
>> *This is Jude from TMIC.  We are having two discussions and need your
>> input.  First, we are talking about the need for a neurologist when someone
>> has TM, and the other topic is the need for flu shots, have you had them
>> and what does your Dr. say about them.*
>> **
>> *There has been quite a bit of activity lately, but we need more.  Will
>> be happy to answer any questions you have or talk about any topics you can
>> think of.*
>> **
>> *I miss hearing from you and hope you write in soon.  In case you have
>> forgotten the site it is:*
>> *tmic-list@eskimo.com .  If you need to receive the emails the address
>> is:  tmic-list-requ...@eskimo.com *
>> **
>> *I love you all,*
>> *Jude*
>> *Michigan, USA*
>>
>
>
>

Re: [TMIC] Need your input

[Pat Cooley]

Jude since everyone with TM suffers in different ways, I believe the
decision to have a flu shot should be an individual one.  I have had 2
different neuros and they both recommend that I don't have any shots in the
future, so I haven't and will not have one in the future.  I mentioned that
I have had 2 different neuros.  The first is from when I was first dx with
TM, and now the second because we moved too far away from the first.  It
has been 2 yrs since I last saw my current neuro as she said I did not need
any more MRI's as I have had at least 5 since TM.  Also I did not need to
make any appt unless things changed or have different symptoms which they
haven't.

Patti C. - Wisconsin

On Mon, Jan 21, 2013 at 10:53 AM,  wrote:

> **
> *Hi ladies and gentleman,*
> **
> *This is Jude from TMIC.  We are having two discussions and need your
> input.  First, we are talking about the need for a neurologist when someone
> has TM, and the other topic is the need for flu shots, have you had them
> and what does your Dr. say about them.*
> **
> *There has been quite a bit of activity lately, but we need more.  Will
> be happy to answer any questions you have or talk about any topics you can
> think of.*
> **
> *I miss hearing from you and hope you write in soon.  In case you have
> forgotten the site it is:*
> *tmic-list@eskimo.com .  If you need to receive the emails the address
> is:  tmic-list-requ...@eskimo.com *
> **
> *I love you all,*
> *Jude*
> *Michigan, USA*
>

Re: [TMIC] Need your input

[Pat Cooley]

Jude since everyone with TM

On Mon, Jan 21, 2013 at 10:53 AM,  wrote:

> **
> *Hi ladies and gentleman,*
> **
> *This is Jude from TMIC.  We are having two discussions and need your
> input.  First, we are talking about the need for a neurologist when someone
> has TM, and the other topic is the need for flu shots, have you had them
> and what does your Dr. say about them.*
> **
> *There has been quite a bit of activity lately, but we need more.  Will
> be happy to answer any questions you have or talk about any topics you can
> think of.*
> **
> *I miss hearing from you and hope you write in soon.  In case you have
> forgotten the site it is:*
> *tmic-list@eskimo.com .  If you need to receive the emails the address
> is:  tmic-list-requ...@eskimo.com *
> **
> *I love you all,*
> *Jude*
> *Michigan, USA*
>

Re: [TMIC] neurologist

[Pat Cooley]

Janet I hope you kicked that doctor to the curb.  He has no business being
a doctor.

Patti C. in Wisconsin

On Fri, Jan 18, 2013 at 10:03 AM, Janet Dunn  wrote:

>  The last neuro that I went to told me that when you are not living a
> good life, then God will afflict you.  When you  straighten up your life
> and live the way you are supposed to, a way that is pleasing to God, then
> He will stop the affliction.  He told me to go home and be grateful that my
> affliction has not caused more damage, and that God has allowed me to get
> to where I am.  geesh, thanks buddy.
>
> Janet
>
> On 17/01/2013 9:50 PM, Janice Nichols wrote:
>
>  I have not been to my neuro in at least 4 years.My family doctor and
> Pain Management doctors take care of me far better than my neuro.Once I
> was out of the hospital for a year or
> two we quit going to him because he just did not do anything except ask
> how I was doing and then that was it. Pain Management doc’s do so
> much more!
> Janice
>
>
>  *From:* heyjude48...@aol.com
> *Sent:* Thursday, January 17, 2013 5:38 PM
> *To:* el...@att.net
> *Cc:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] neurologist
>
>
>
>

Re: [TMIC] need for a neuroloist

[Pat Cooley]

Pattie V:  It has been a little over 2 yrs since I have gone to my neuro.
The last time she said I had enough MRI's over the last couple of years,
and didn't need anotherl.  She also said I didn't need to see her unless
there was a change or new symptoms, which there hasn't been.  My primary
has renewed my Rx.  Fortunately I don't need pain meds as yet.  I also saw
the PA the last time I went a couple of months ago.  I like her as much as
I do my regular doctor.  In many cases the PA is just as knowledgeable.

It is obvious that your new primary wanted to send business to her neuro
friend.

Patti in Wisconsin

On Tue, Jan 15, 2013 at 8:53 PM,  wrote:

> I had the same neurologist for first five years of TM.  I had several
> MRI's and he was satisfied that I didn't have MS (TM left me with cognitive
> problems).  I had been on the same medications for two years, my primary
> said he would renew my rx when needed, and I didn't feel the need to
> contnue seeing my neuro (140 mile round trip).
>
> That worked for another two years until my primary moved and his
> replacement refused to write my rx for the Lyrica and Baclofen.  She
> referred me to her neuro buddy, but I made an appointment with another
> neuro whom I had heard was "the best" from one of his MS patients.
>
> The new Neuro agreed with my med regime, agreed that there was no need for
> MRI's, and agreed that I didn't need to see him oftener than annually
> unless I had neurological changes.  The new neuro also understood my
> frustraton with a primary who would not renew my Lyrica and Baclofen rx.
>
> I never went back to that primary and have since seen a Physicians
> Assistant for my regular illnesses.
>
> I didn't think I needed a neurologist.  However, I realize that as long as
> I need Baclofen and Lyrica and it is wise to have one available.
>
> Patti V. - Michigan
>

Re: [TMIC] Face book

[Pat Cooley]

essage - 
>
> *From:* Robert Pall  
>
> *To:* jcs...@yahoo.com ; tmic-list@eskimo.com 
>
> *Sent:* Tuesday, January 15, 2013 8:11 AM
>
> *Subject:* Re: [TMIC] Face book
>
> ** **
>
> I get the Flu and Pneumonia shot and have never gotten the flu in the past
> 15 years. And The TMIC_LIST is pretty much the only one I read...it is too
> bad that so many of our group has gone to facebook...I guess you can't stop
> progress!~
>
> Rob in New Jersey
>
> ** **
>
> ** **
>
> ** **
>
> -Original Message-
> From: john snodgrass 
> To: transverse myelitis 
> Sent: Mon, Jan 14, 2013 10:59 pm
> Subject: Re: [TMIC] Face book
>
> ** **
>
> i had the flu shot and the pneumonia shot the same time and i still cant
> play the violin!
>   ----------
>
> *From:* Dalton Garis 
> *To:* Pat Cooley ; pjv1...@chartermi.net
> *Cc:* tmic 
> *Sent:* Monday, January 14, 2013 9:31 PM
> *Subject:* Re: [TMIC] Face book
>
> ** **
>
> I still listen and read.
>
> ** **
>
> Because I still have TM and always will.  By the Way, that mustard cure
> has greatly reduced seizures for me.  Now, I only get them every 10 days or
> so.
>
> ** **
>
> DG
>
> Dalton Garis
>
> Flushing, Queens
>
> New York, USA
>
> Mobile: 718-838-0437
>
> ** **
>
> *From: *Pat Cooley 
> *Date: *Monday, 14 January 2013 8:33 PM
> *To: *
> *Cc: *tmic 
> *Subject: *Re: [TMIC] Face book
> *Resent-From: *
> *Resent-Date: *Mon, 14 Jan 2013 17:33:21 -0800
>
> ** **
>
> Patti I think you made the right decision.  You have to do what is best
> for you and your family.  You need to protect your mom, hubby &
> grandchildren.
>
>  
>
> Patti C. in Wisconsin
>
> On Mon, Jan 14, 2013 at 5:39 PM,  wrote:
>
> I've noticed some talk of people comng back to the tmic list for
> discussions and wondered just how many people actually look at this site
> anymore.  The onky discussion I have is that I received my first flu shot
> last Wednesday since my 9 years with TM.  We had two deaths from the flu in
> our area and I had a fear of carrying the flu to my 86 year old Mom, my
> diabetic hubby, or my grandchildren.  My fears of being a carrier
> outweighed my fear of a reaction.  I called my Neurologist and asked if he
> had any objection to me getting the flu shot.  His answer was go ahead and
> get it.
>
> ** **
>
> Patti V - Michigan 
>
>
>
> 
>
> ** **
>
> ** **
>
>

Re: [TMIC] flu

[Pat Cooley]

I have had TM over 4 yrs.  I don't believe mine was caused by the flu shot
and I had my last shot in October and didn't get TM until the following
June.  But, I am just too scared to get another one.  Since I am retired I
don't have to go out when I don't want to, and my whole family who I have
contact with all have had the shot, including my hubby so I think I am safe
without it.

Patti in Wisconsin
On Tue, Jan 15, 2013 at 9:57 AM,  wrote:

> Have had TM for ten years and have had the flu shot each year with no
> problem.  This is the only site that I read.

Re: [TMIC] Face book

[Pat Cooley]

Patti I think you made the right decision.  You have to do what is best for
you and your family.  You need to protect your mom, hubby & grandchildren.

Patti C. in Wisconsin

On Mon, Jan 14, 2013 at 5:39 PM,  wrote:

> I've noticed some talk of people comng back to the tmic list for
> discussions and wondered just how many people actually look at this site
> anymore.  The onky discussion I have is that I received my first flu shot
> last Wednesday since my 9 years with TM.  We had two deaths from the flu in
> our area and I had a fear of carrying the flu to my 86 year old Mom, my
> diabetic hubby, or my grandchildren.  My fears of being a carrier
> outweighed my fear of a reaction.  I called my Neurologist and asked if he
> had any objection to me getting the flu shot.  His answer was go ahead and
> get it.
>
> Patti V - Michigan
>

Re: [TMIC] January birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL JANUARY BABIES.

On Tue, Jan 1, 2013 at 11:39 PM, Barbara H.  wrote:

> Happy Birthday to those celebrating in January! And Happy New Year, too!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 1/8 Nancy Williams   (willj...@aol.com)
>
> 1-8 Sandi (sam...@fidmail.com)
>
> 1-17 Ginna Hamilton (ginnahamil...@yahoo.com)
>
> 1/20 Kay Cole (k...@cole.gen.nz)
>
> 1-21 Blaine Frye (xring...@mwt.net)
>
> 1/21 Carol Easterday (snow121...@hotmail.com)
>
> 1/23 Grace (grace...@gmail.com)
>
> 1-27 Pat S. (w2sm...@aol.com)
>
> 1-28 Holly (r...@aol.com)
>
> 1-28 Sally (thenavigato...@aol.com)
>
>
>

Re: [TMIC] December birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL MY FELLOW DECEMBER BABIES.

PATTI IN WISCONSIN

On Sat, Dec 1, 2012 at 4:37 PM, Barbara H.  wrote:

> Happy Birthday to those born in December. "May your days be merry and
> bright!"
>
> Please send any additions or corrections to: tmic-list@eskimo.com
>
> 12-2 Meghan (bluemeg...@hotmail.com)
>
> 12/2 Ashlee Black (tracey.bl...@hnoins.com)
>
> 12/3  Janice (jan...@centurytel.net)
>
> 12-3  Wim from Holland (wim_from_holl...@hotmail.com)
>
> 12- 4 Jan Burgess (ja...@rogers.com)
>
> 12-7 Patti in Wisconsin ((wpcoo...@gmail.com)
>
> 12-8 Lori Malloy (jorlcummi...@earthlink.net)
>
> 12-15 Alton Ryder(a-ry...@comcast.net)
>
> 12/23 Roger Pratt (r.c.pr...@frontier.com)
>
> 12-25 Gilly (gillyma...@aapt.net.au)
>
> 12/31 Janet (j.d...@shaw.ca)
>
>

Re: [TMIC] Looking for input. solving a problem urinating

[Pat Cooley]

Janice your experience mirrors mine.  I seem to be able to empty my bladder
during the day, but at night it seems I can either be soaked in the am, or
find I am fairly dry and I never know which one it is going to be.  I also
wear plenty of protection at night and also get up at least once during the
night to go.

Patti - Wisconsin

On Mon, Nov 12, 2012 at 10:25 PM, Janice Nichols wrote:

>   Bridget, glad you are doing to see a someone about the bladder
> retention.I had a urology specialist and it did really help.Still
> have problems, but can empty my bladder
> completely on my own.Problems are at night when I make a lot of urine
> and don’t feel it enough to wake up and go to the bathroom.I seem to go
> in cycles of heavy flow of
> urine at night and then a short while of being fairly dry when I wake up
> in the morning.Go to bed with lots of protection.I know that I will
> probably not ever be much better
> with this problem, but at least I do not have to cath any more.
>
> Janice
>
>
>  *From:* a-ry...@comcast.net
> *Sent:* Monday, November 12, 2012 2:49 PM
> *To:* Jde 
> *Cc:* tmic 
> *Subject:* Re: [TMIC] Looking for input. solving a problem urinating
>
> > *Is it just as easy as regular cathing?*
>
> Yes, the same.
>
> > *Do you have to deal with leaking and how do you deal with it?*
>
>   If you had asked me yesterday I'd have said the only sign of leaking
> was a wetness at the hole.
>
> But yesterday I was rudely reminded of a vulnerability all indwelling
> caths share: if you pull the
>
> cath by accident you injure the bladder, and the bladder reacts with both
> sphincter and detrusor
>
> spasms. And a bit of blood in the bag. The detrusor wins, and a gush of
> wetness follows.
>
> Alton, with a month of unanswered mail
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> - Original Message -
> From: Jde 
> To: a-ry...@comcast.net
> Sent: Fri, 28 Sep 2012 17:20:46 - (UTC)
> Subject: Re: [TMIC] Looking for input. solving a problem urinating
>
>
> *Hi Alton,*
> **
> *I don't know if you remember me, but I used to be on TMIC site several
> years ago and then go tired of all of the arguements and signed off for a
> while.  Anyway, I am back and am interested in suprapubic catheters.*
> **
> *One of my doctors is really pushing me to get it done and Urologist does
> not want me to.  I'm not sure what to do.  How are you doing after having
> gotten it done?  Is it just as easy as regular cathing?  Do you have to
> deal with leaking and how do you deal with it?*
>
> *Thanks,*
> *Jude Hoops*
> **
> Practice Random Acts of Kindness
>
>
> -Original Message-
>
> From: a-ryder 
>
> To: Bridget Skinner 
>
> Cc: Janice Nichols ; john snodgrass <
> jcs...@yahoo.com>; Elizabeth Clark ; Janet Dunn <
> j.d...@shaw.ca>; tmic-list 
>
> Sent: Sun, Sep 9, 2012 11:12 am
>
> Subject: Re: [TMIC] Looking for input. solving a problem urinating
>
>  > Also, I have a problem urinating. I have to push really hard no matter
> how bad I have to go.
> Bridget, the bladder problem has an easy solution - a catheter, either
> intermittent or indwelling (also called a Foley catheter.)
> I had a spinal infarction on 1997 that, amongst other blessings, left me
> with the same the same bladder symptom - the detrusor**muscles insisted
> on voiding while the bladder sphincter refused to allow it. I was caught in
> the middle of the conflict.  The solution was to use a catheter, a soft
> tube with a closed end and a hole in the side just before the end. Inserted
> into the urethra through the sphincter to the bladder, it drained the
> bladder. After a few months of using this “straight cath.” I switched to a
> Foley, a cath with a ballon on the end that could be inflated with water
> once it was in the bladder; the ballon kept the cath from being expelled.
> I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic
> cath installed.
> Pros and cons:
> Intermittent:
> pro:you can do it forever
> con:the bother (compared to the alternatives) of finding a urinal
> Indwelling:
> pro:you need empty accumulated urine only twice a day
> con:you wear a bag on your leg (day) and connect to a large bag at
> night
> con:the cath must be changed at least once a month
> con:years of use can damage the urethra if you are not careful
> Suprapubic:
> pro:you need empty accumulated urine only twice a day
> con:you wear a bag on your leg (day) and connect to a large bag at
> night
> con:the cath must be changed at least once a month
> con:you now have a tube coming out your belly
> Alton
> - Original Message -
>
> From: Bridget Skinner 
> To: Janice Nichols 
> Cc: john snodgrass , Elizabeth Clark <
> xbeecla...@gmail.com>, Janet Dunn , tmic-list@eskimo.com
> Sent: Sat, 08 Sep 2012 22:49:36 - (UTC)
> Subject: Re: [TMIC] Looking for input.
> I wanted to let you know as promised that i FINALLY got insurance in place
> and I saw

Re: [TMIC] November birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIES.

PATTI - WISCONSIN

P.S. I MISS HEARING FROM ALL OF YOU ON TMIC.  IT SEEMS NO ONE USES THAT WAY
TO COMMUNICATE WITH EACH OTHER.  I USUALLY READ EVERYTHING ON THE VARIOUS
FB GROUPS, BUT MISS ALL THE REGULARS.

On Thu, Nov 1, 2012 at 8:12 AM, Barbara H.  wrote:

> Happy Birthday to those born in November!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 11-01 Ella (elbanks...@aol.com)
>
> 11-2 Jeff (jeffsmokeea...@yahoo.com)
>
> 11-03 Gina (gina1103c...@aol.com)
>
> 11-6 Margaret Monson (mag...@telus.net)
>
> 11-8 Diane (mon...@sympatico.ca)
>
> 11-12 Marie (chestnutr...@gtcom.net)
>
> 11/13  Kevin (wolft...@optonline.net)
>
> 11-17 Becky (opi...@bellsouth.net)
>
> 11/20 Cossy (cos...@yahoo.com)
>
> 11/22 Judy Hoops (heyjude48...@aol.com)
>
> 11-25 Gunny (bgunny7...@aol.com)
>
> 11-27 Jack McMillan at rebarj...@aol.com
>
> 11-30 Louise Flagg (fla...@webtv.net)
>
>
>

Re: [TMIC] October birthdays

[Pat Cooley]

HABBY BIRTTHDAY ALL OCTOBER BABIES.

PATTI

On Fri, Oct 5, 2012 at 3:58 PM, Barbara H.  wrote:

> Wow, I'm sorry I am so late with these! It's been busy and time got away
> from me. But I hope all of you born in October have a wonderful birthday.
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 10-3  Lauren Graham (grahamsn...@aol.com)
>
> 10/4 Neil McNeil (n...@hotmail.com)
>
> 10-7 Naomi (ladyno...@aol.com)
>
> 10/08 Rudy Aceves (race...@vengrp.com )
>
> 10/9 Assunta Rene (robert...@hotmail.it)
>
> 10/11  Lori B. (lbieh...@earthlink.net)
>
> 10-11  Kate  (nicwi...@cox.net)
>
> 10-12 Diana Gray (graymyfat...@aol.com)
>
> 10/14 Marieke Dufresne! (marieke...@hotmail.com)
>
> 10/14 Lanora (noni...@hotmail.com)
>
> 10/16 Sandy Parker (parkersw...@aol.com)
>
> 10/16 Linda Cherpeski (cherp...@msn.com)
>
> 10-21  Renee A. in CT (littlem...@aol.com)
>
> 10-21 Cody Kidwell (c...@austin.rr.com)
>
> 10/21 Candy K (cakal...@embarqmail.com)
>
> 10-23 Keith (leboo...@cfl.rr.com )
>
> 10-25 Debby Jones (ladybutl...@comcast.net)
>
> 10-26 Jim Lubin jlu...@eskimo.com
>
> 10-26 Bernie Pelow ((bpe...@austin.rr.com)
>
> 10/27 Robin (moldr3...@aol.com)
>
> 10/27 Krissy (ladykri...@comcast.net)
>
> 10-28 Netta Ganor (net...@isdn.net.il)
>
>
>

Re: [TMIC] September Birthdays

[Pat Cooley]

I WISH A HAPPY BIRTHDAY TO ALL YOU SEPTEMBER BIRTHDAY BABIES PLUS A VERY
BIG REMEMBRANCE TO PAM.  PAM I STILL MISS YOU!!!

PATTI IN WISCONSIN




> Happy Birthday to those born in September!
>
> Please send any additions or corrections to tmic-list@eskimo.com/
>
> This month we also remember Pam (montzma...@aol.com), who passed away a
> few years ago, She was a friend to many. Her birthday was 9/9.
>
> 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com )
>
> 09-06 Jake DeGrand (judidegra...@yahoo.com)
>
> 9-8 Mary Davidson (keebe...@aol.com)
>
> 9/8 Terry Parker (parkersw...@aol.com)
>
> 9/12  R. J. Rankin (rj_ran...@yahoo.com)
>
> 9-16  Mary Eden Cochran (coch6...@bellsouth.net)
>
> 9-17 Bill Wimberly- (bwimbe...@bellsouth.net)
>
> 09/20 Rob Pall (robthe...@aol.com)
>
> 9-23 Karen  (Mushroo) (mush...@juno.com)(mushr...@hotmail.com)
>
> 9-24  Suzi in Seattle (ss1...@aol.com)
>
> 9/26 Allen Rucker a...@allenrucker.com
>
> 9/30 Patti Enstrom (pge...@aol.com )
>
>
>
>

Re: [TMIC] reply

[Pat Cooley]

Mary Anne, please do not leave this site.  As we all know, we all
experience days when everday things are more than we can tolerate.  I
know I do, and unfortunatetly we take it out on family.  I consider
all my TM friends as part of my family.  As quickly it happens, it
blows over and we are sorry for our outburst.  There are many of us
that do not have all the pain, etc., that many of us do.  Also, there
are many of us who have family and friends that help  us and make our
lives more bearable and are more able to do things for themselves, but
there are some of us who are not so lucky.

When something like this happens, I chalk it up to a bad day for
someone and don't take it personally.  Anyway that is my 2 cents
worth.

Patti

On Fri, Aug 10, 2012 at 8:47 PM, Mary Anne Egan
 wrote:
> For whatever reason I could not reply to the series of emails from
> earlier
>
> Nonetheless, I would like to express my confusion.I found this site
> years ago...for me the intention was the hope of finding an arena for
> helping me understand TM, navigate our new life with a disability, ideas
> from other TMers, solutions, tricks, even complain when TM and its secondary
> issues get to be too muchas the years have passed it seems to be less
> and less about TM and more and more about criticism...this conversation was
> about a seemingly innocent post about a TV show, love it hate it, express
> your opinions, but at some point the "conversation" stopped being about the
> show and became a forum for criticising and judging members who commented
> for liking or hating a show.  No agreement to disagree but implied judgement
> about what kind of person would feel "that way"  a lot of negative
> hostility...I had no intention of justifying why I liked or disliked a TV
> show that I felt served a purpose for my personal situation...when I joined
> this site...
>
> I am not asking for any feedback as it seems likely to go in the wrong
> direction...agree to disagree and leave it therelove the show hate the
> show who really cares...my life is significantly more complicated than an
> argument about a stupid tv show and I should never feel the need to justify
> myself or feel the need to respond to criticsim of my opinion regardless of
> how I feel...not on this site...and if I am wrong than this is not the site
> for me I can assure you
>
> --
> Mary Anne

Re: [TMIC] August Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL YOU AUGUST BABIES.

On Tue, Jul 31, 2012 at 11:35 PM, Barbara H.  wrote:
> August is one of the biggest birthday months for TMers! Happy Birthday to my
> fellow August birthday celebrants!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 8/1 Peachi (pkeene2...@aol.com)
>
> 8/1 Cindy McLeroy (cindymcle...@socal.rr.com)
>
> 8- 1 Stacy Firth (safi...@dow.com )
>
> 8-3 Larry Throne (lbthr...@hotmail.com )
>
> 8-10 Sean Indiveri (sindiv...@hotmail.com)
>
> 8-11 Raylene Gökeri (mrs_gok...@yahoo.com)
>
> 8-11 Michelle Maricic (mmari...@aol.com)
>
> 8-11  Dalida S. Ortiz de Garcia (py...@yahoo.com)
>
> 08/17 Sandra (Harth) Brassil (sbras...@aol.com)
>
> 8-17 Kim (jnks...@huntel.net)
>
> 8-19 Saroj (sarojkumar...@gmail.com)
>
> 8-21 Barbara H. (barbara...@gmail.com)
>
> 8-23 Cole (neilandwe...@rogers.com)
>
> 8-29 Kathleen (kathleen.kar...@gmail.com)
>
> 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
>
>

Re: [TMIC] Rick back on list.

[Pat Cooley]

I am here too.  I know most of us are on facebook, but I miss many who
are only on this site.  I have not heard from Jude for quite some time
even though I do send her messages.  I think of her so often and wish
we would hear from her or Dave.

Patti in Wisconsin

On Fri, Jul 13, 2012 at 10:42 AM, Linda Egli  wrote:
> I am still here.  Not a lot of talk on this site anymore, I think most use
> Facebook.  I am now going on 8 1/2 years with TM & I guess I am as good as
> I'm going to be.  My neurologist said last December that he no longer needs
> to see me unless their is a problem.  I am just followed by my PCP, but she
> is very good.  I haven't heard anything from or about Jude in a long time.
> I haven't heard about anything new to try - wish there was.I developed a
> bad tremor in my right hand(of course I am right handed) after 3years with
> TM & the numbness in my hands can be really bad, but I manage as best I can.
> Glad to see some talk on this site.
> Linda E.
>
> 
> From: Richard Ashford 
> To: tmic-list@eskimo.com
> Sent: Friday, July 13, 2012 1:09 AM
> Subject: [TMIC] Rick back on list.
>
> Hello everyone who might remember me. I hope all of you are as well as tm
> will
> let you be. I'm looking forward to hearing from you who want to be in touch
> with
> me. I'm also looking forward to hearing if there has been any serious
> advances
> in our treatments. Gunny, Grace, Barb, Jude all the old crew I hope
> especially
> to hear form you. My condition has not changed, and my insurance and
> medicaid
> compleatly realeased me so now I'm having to pay out the nose for personal
> insurance. Thanks Barack! Well any way my e-mail will be monitored
> constantly
> again. I wish all of you the best of everything and hope to talk to you
> soon.
> Sincerely Rick Ashford
>
>
>
>

Re: [TMIC] UNBELIEVEABLE

[Pat Cooley]

Cheryl that is so good to hear.  That time I am sure pain really felt
good.  I hope you continue to experience improvements, even after 17
yrs.  It gives many us hope that we could possibly see improvement in
the years to come.

Patti om Wisconsin

On Thu, Jul 5, 2012 at 10:31 PM, rn11...@yahoo.com  wrote:
> Hello my friends,
>   On 8/13 I will have my 17th anniversary of having tm. I have been numb
> from T4 to toes since that time, except for a small area on my left thigh.
>   On the 3rd of July,my cat ran toward me to jump into my lap. She missed,
> and in the process gave me 2 fairly deep scratches in my lower left leg.
>   After being numb for all this time, I felt the pain of the scratches,and I
> can actually tell what is touching my entire left leg! I am amazed at this.
> It is something I never expected.
>   I have an ulcer on the bottom of my right heel,and went to a wound clinic;
> doc ordered VNA for dressing changes. After being evaluated by nurse, she
> had PT and OT see me.I don't know if this is related or not.
>   I never thought I'd be happy to have pain!
>   I hope you are all doing well.
>   Cheryl

Re: [TMIC] July Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE JULY BABIES.  HAVE A GREAT DAY

PATTI IN WISCONSIN


On Thu, Jul 5, 2012 at 5:01 PM, Barbara H.  wrote:
> Happy Birthday to the July kids! Hope you enjoyed the fireworks! :-)
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 7-5 Sumer (fjs181...@aol.com)
>
> 7/5 Rick in tn (ashfo...@att.net)
>
> 7-14 Julie (chi...@cox.net)
>
> 7-15  Sandi Siegel (ssie...@myelitis.org)
>
> 7-24 Kevin Weilacher (hwyfli...@yahoo.com)
>
> 7-25 Peggy Wilson (pwi1991...@aol.com)
>
> 7-25 (jennapa...@aol.com)
>
> 7-25 Michelle Balliet (chelley...@aol.com)
>
> 7-27 Linda (lp...@aol.com)
>
> 7/29 Hildred (missprissgran...@aol.com)
>
> 7/30 Dex Packard (d...@centurytel.net)

Re: [TMIC] 13 years tm

[Pat Cooley]

Robert you have a wonderful outlook.  It has only been 4 yrs for me
and I believe I have come as far as I will ever come.  I can walk in
the house unaided but need a cane when I go out.  If you can walk your
dog you must be doing pretty good.  I do get depressed at times, but
my family usually can pull me out of it.  Right now the fatigue is
what gets to me.

Patti

On Wed, Jun 27, 2012 at 10:49 AM, Robert Pall  wrote:
> It will be 15 years in September for me. I can honestly say that I have had
> little change in my condition over the past 14 years. I guess you become
> more adapt at handling TM after a number of years. I try to stay active
> (swimming every day for an hour). I even got a dog .a Golden Retriever
> who at six months is already dragging me off my feetbut at least it
> forces me to walk for at least an hour a day. I will be 65 in Sept and I
> realize I will be going through all of the conditions associated with
> getting older...but for as long as possible I will not let TM define who I
> am. Thinking back 15 years went by in an instant. better start living or
> start dying!
> All the best!
> Rob in NJ
>
>
> -Original Message-
> From: DeeRERE 
> To: tmic-list 
> Sent: Wed, Jun 27, 2012 11:10 am
> Subject: [TMIC] 13 years tm
>
> I HAVE HAD TM FOR 13 YEARS IN JULY. I AM PARALIZED FROM THE WAIST DOWN, MY
> ARMS AND HANDS HAVE PAIN EVERY DAY. WHEN I READ SOME LETTERS I THINK HOW
> LUCKY THEY ARE. I HAVE A GREAT HUSBAND THAT TAKES CARE OF ME. I AM BLESSED
> FOR HIM. BUT THIS TM IS SOMETHING I THOUGHT I COULD NOT LIVE WITH BUT IT HAS
> BEEN 13 YEARS. GOD BLESS EVERYONE. MARIE

Re: [TMIC] June birthdays

[Pat Cooley]

HAPPY BIRTHDAY ALL JUNE BABIES!!

PATTI IN WISCONSIN

On Fri, Jun 1, 2012 at 5:49 AM, rn11...@yahoo.com  wrote:
> HAPPY BIRTHDAY TO ALL THOSE BORN IN JUNE
>    Cheryl

Re: [TMIC]

[Pat Cooley]

Tracey please congratulate Ashlee for me.  She sounds like a
remarkable young lady.  With her determination she will go far in the
future.  You must be VERY proud.

Patti

On Wed, May 23, 2012 at 9:14 AM, Tracey L. Black
 wrote:
> Janice:
> Ashlee hit her 7 year mark in February. There are still mornings that she 
> will wake up wet, but normally if she sleeps longer than normal. She normally 
> limits her liquid intake in the evenings and then pees when she is getting 
> ready for bed and then goes again right before she gets in bed. She is on 
> 15mg of Oxybutnin a day, which she takes in the morning. At one point she had 
> been on a 10mg in the morning and a 5mg at night and that worked but just got 
> to be a pain b/c she takes all of her other pills in the morning.
> I just want to let you all know that on June 5 she will be graduating from 
> High School. She is a member of the National Honor Society and is 41 in her 
> class of about 200 students. She has about a 4.0 gpa. She is scheduled to 
> take a summer math course at HACC starting in mid July for 4 weeks 4 days a 
> week and then starts her 4 fall classes at the end of August. She is going 
> for her Associates Degree in Business Administration/Management.
>
> Tracey L. Black
> Certified Insurance Service Representative
> Hockley & O'Donnell Insurance Agency
> PO Box 3039, 132 Buford Avenue
> Gettysburg, PA 17325
> Phone:     717-334-6741, x 29
> Fax:       717-334-3414
> Office hours:   8:00 a.m. - 5:00 p.m.
> My hours:       9:00 a.m. - 5:00 p.m.
>
>
>
> Insurance coverage cannot be bound or altered without confirmation from a 
> licensed agent. If you do not hear from us within 1 business day, please 
> re-contact us in case your information has not be retained. This message 
> contains confidential information for use only by its intended recipients and 
> may contain information that is proprietary, privileged, and protected under 
> the law (including Gramm-Leach-Bliley and HIPAA/HITECH). If you are not the 
> named addressee, you are hereby notified that any use of, distribution of, 
> copying, or reliance upon the contents of this e-mail is strictly prohibited 
> and may result in criminal or civil penalties. Please notify the sender 
> immediately by e-mail if you have received this by mistake and delete this 
> e-mail from your system. Thank you.
>
>
> -Original Message-
> From: Pat Cooley [mailto:patticoole...@gmail.com]
> Sent: Wednesday, May 23, 2012 10:02 AM
> To: Jan ice Nichols
> Cc: tmic-list@eskimo.com
> Subject: Re: [TMIC]
>
> Janice I experience bladder problems similar to yours.  I am not bothered  
> much with spasms.  I do exerience them at times in my legs.
> It has been 4 yrs for me, at least in June it will be 4 yrs.  I have noticed 
> that when I don't get ti the bathroom regularly, I experience pains just 
> above my pelvic bone.  Much like prementrual cramps. That tells me it is time 
> to go potty.
>
> My nights are like  yours.  Some mornings I find that I am almost dry; others 
> I am completely soaked even though I may get up to go potty 2-3 times during 
> the night.  I have a large pad that goes completely over my bed as I 
> experience leaking on those heavy nights.  It doesn't matter how much I drink 
> at night.  I was told to restrict liquids after 6:00 pm which I do.  Only 
> drinking enough  to be able to take my pills.  I don 't think doctors really 
> know what is going on when you have TM.  It is s frustrating.
>
> On Wed, May 23, 2012 at 2:45 AM, Janice Nichols  wrote:
>
> Patti in Wisconsin
>
>> Hi TM'ers,
>>
>> This question probably pertains mostly to female TM'ers, but maybe not.
>>
>> Is it my imagination or have you all noticed that spasms increase from
>> the waist down, legs included,  when the bladder is saying it is time
>> to go to the bathroom?    I have changed the wording several times to
>> make it say what I am trying to ask.    Hope you get my meaning.
>>
>> Also, have any of you gotten consistent improvement in bladder control
>> or have you pretty much leveled out as far as improvement is
>> concerned.    If you keep improving, please give me the length of time
>> you have had TM. I have had TM for
>> 5 years and seem to go back and forth, sometimes 2-3 weeks at a time,
>> waking up with wet pads and then, for a while, fairly dry (but never
>> completely).   It doesn't seem to matter how much I drink during
>> the day or in the evening.   When I was in the hospital, the doc's
>> kept talking about my bladder needing time to "wake up" after being
>> paralyzed.    Well, mine seems to wake up a little and then snoozes
>> again.  Frustrating.
>>
>> Janice
>

Re: [TMIC]

[Pat Cooley]

Janice I experience bladder problems similar to yours.  I am not
bothered  much with spasms.  I do exerience them at times in my legs.
It has been 4 yrs for me, at least in June it will be 4 yrs.  I have
noticed that when I don't get ti the bathroom regularly, I experience
pains just above my pelvic bone.  Much like prementrual cramps. That
tells me it is time to go potty.

My nights are like  yours.  Some mornings I find that I am almost dry;
others I am completely soaked even though I may get up to go potty 2-3
times during the night.  I have a large pad that goes completely over
my bed as I experience leaking on those heavy nights.  It doesn't
matter how much I drink at night.  I was told to restrict liquids
after 6:00 pm which I do.  Only drinking enough  to be able to take my
pills.  I don 't think doctors really know what is going on when you
have TM.  It is s frustrating.

On Wed, May 23, 2012 at 2:45 AM, Janice Nichols  wrote:

Patti in Wisconsin

> Hi TM’ers,
>
> This question probably pertains mostly to female TM’ers, but maybe not.
>
> Is it my imagination or have you all noticed that spasms increase from the
> waist down, legs included,  when the bladder is saying it is time to
> go to the bathroom?    I have changed the wording several times to make it
> say what I am trying to ask.    Hope you get my meaning.
>
> Also, have any of you gotten consistent improvement in bladder control or
> have you pretty much leveled out as far as improvement is concerned.    If
> you keep improving,
> please give me the length of time you have had TM. I have had TM for
> 5 years and seem to go back and forth, sometimes 2-3 weeks at a time, waking
> up with wet pads
> and then, for a while, fairly dry (but never completely).   It doesn’t
> seem to matter how much I drink during the day or in the evening.   When
> I was in the hospital, the doc’s
> kept talking about my bladder needing time to “wake up” after being
> paralyzed.    Well, mine seems to wake up a little and then snoozes
> again.  Frustrating.
>
> Janice

Re: [TMIC] Is anyone here?

[Pat Cooley]

Rob we are still here.  At least I know I am.  It seems everyone has
gone to the several Face Book groups like Transverse Myelitis Folks.
I know all the posts can be a bit much at times..  I am doing the best
I can hope you are too.

Patti






On Thu, May 17, 2012 at 7:33 AM, Robert Pall  wrote:
> Hi...lately the only mail I receive is from"friends living with TM" I
> just left that facebook room because I was getting far to many chats. Is our
> network still active or has everyone joined another group. This is where I
> started and this is where I belong.
> I would love to hear back from all of the "active" members and see how they
> are doing!
> Rob in New Jersey

Re: [TMIC] cancer vs tm

[Pat Cooley]

Cheryl I don't think any of us believe you are crazy.  I can't relate
to your cancer but this TM thing can be just too much at times.  Some
days are good and some are terrible.  I hope you can connect with a
good pain doctor soon.

Patti

 On Sat, May 5, 2012 at 9:43 PM, Janice Nichols  wrote:
> Cheryl,
> Congrats on the cancer diagnosis.  You are a strong individual and can
> handle anything life throws at you – you have proven that. I, too, am
> interested to know if you are on
> baclofen and neurontin – and what strength you are taking with them.    Both
> of them can be taken in high doses with much relief.    You have got to
> get relief from this kind of
> pain and the only way it can be done is through doctors.    If your neuro
> isn’t coming through with it, a good Pain Management Doctor can. I have
> one that has helped me tremendously.
> Let me know if I can help further.    You are too good a person to have to
> live with that much pain – there is help out there.
>
> Janice
>
>
> From: rn11...@yahoo.com
> Sent: Saturday, May 05, 2012 3:49 PM
> To: tmic
> Subject: [TMIC] cancer vs tm
>
> Hi,
>   As many of you know I was diagnosed with stage IV breast cancer last year
> (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill
> daily.Just had a PET/cat scan and it is markedly improved. I possibly can
> survive for years this way.
>
> So,I was thinking. If I could have a choice,what would I choose?
> I would keep the cancer.
>
> I have such terrible burning in my legs,the banding around my trunk is
> awful,and I'm just so sick of this crap. I hate having no real life
> anymore;wake up with pain,suffer all day,and go to sleep in pain.
> Nothing helps.
> I know that those of you with tm will understand this; I think if I posted
> this at the breast cancer sites I belong to,they would think I'm crazy.
> Thanks for listening. Hope you are all doing well.
> Cheryl

Re: [TMIC] May Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE MAY BABIES.  HOPE YOU ALL HAVE A GREAT DAY.

PATTI

On Mon, Apr 30, 2012 at 10:37 PM, Barbara H.  wrote:
> Happy Birthday to those born in May!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 5/5 Linda Garrett  (limoga43...@yahoo.com)
>
> 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com)
>
> 5-11 Lynn (roseofr...@aol.com)
>
> 5-12 mother...@msn.com
>
> 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com)
>
> 5/31 Wendy Wood (ww...@optonline.net)
>
>
>

Re: [TMIC] What hurts

[Pat Cooley]

John that sure sounds like a great idea.  It will never happen as it
is too simple a solution.

Patti

On Mon, Apr 2, 2012 at 12:34 PM, john snodgrass  wrote:
> our government wastes so much money on things that are not necessary.
>
> i have a pipe dream:
>
> it would be great if when people become ill and need assistance if
> they don't have the wherewithal to do what they need to do to make life
> bearable, if the government that is supposed to be for the people would say"
> we can move you closer to like John or Kevin, or whoever where ever,,,they
> have a lot of help and can assist you with your needs"
>
> how beautiful would that be!
>
>
>
> 
> From: Kevin Wolfthal 
> To: a...@artfarm.com; tmic 
> Sent: Monday, April 2, 2012 12:28 PM
> Subject: Re: [TMIC] What hurts
>
> Akua,
> I live in a big city. Even though there are some organizations that help the
> disabled, it seems
> the big push from social workers and even nurses, is that I should go on
> medicaid in order
> to get the most services. My Parents, (gone now), and I, worked hard for
> many years to have
> a little security and comfort. Going on Medicaid means divesting all of ones
> assets but for
> the bare minimum, and having the state own your soul. No thank you! So I own
> my own
> condo that I inherited, but I live in a building that offers the bare
> minimum of access, and
> the workers are hostile to me. I struggle to make ends meet on SSDI.  I even
> received an anonymous handwritten threatening message
> a few months ago, which I have discussed with the police. Nothing they can
> do right now. My saving grace is my aide who
> cooks, cleans and shops for me 4 days a week.
>
> I would move to a more accessible and friendly place if I was not so
> physically depleted and
> could afford it. You are not alone in having to make the best of a difficult
> situation. There
> is no guarantee of sensitivity even from other disabled folks, though we
> hope that those
> in similar circumstances have more understanding, it's not always the case.
> This group
> has given more support than most I've found, but misunderstandings happen,
> as in most
> relationships.
>
> Hoping you find answers and help for your needs.
>
> Kevin
>
>
>
>
>
>
>
>
>
>
> a...@artfarm.com wrote:
>> What hurts, Bernie, is the *Victim-blaming* implicit in the question " why
>> do you stay"
>> and whole passive agressive  "if you don't like it just go somewhere else"
>> it *pushes a button* in me, of other causes and other efforts
>>  where,  when one protests ill treatment, one is told
>>
>> *to pack up and go*
>>
>> And the sad, bad  part is  EVEN IF I WANTED TO I CAn't
>>
>>  but the worst part is,  i*f i could, i would but if i could, then i
>> wouldn't*
>> *want or have to...*
>> *
>> *
>> *if i could marshall the resources to move, i could marshall the
>> resources*
>> *to make it better, to fix it…*
>> *
>> *
>> but that doesn't even get to the why should i be the one to leave my home
>> that i worked so hard to get and give up my little yard and the trees i
>> planted
>> and all my tools and equipment?
>> *
>> *
>> *
>> *
>> *
>> *
>
>
>

Re: [TMIC] Blown Away

[Pat Cooley]

I completely agree.  Lack of money and the fact that you are dependent
on other people is what makes it impossible to make changes in your
life.  Most of us are in the same boat, we are a prisoner of our
limitations.  That is why even though it was the hardest thing I have
ever done is move 125 miles to be close to our daughter.  I did have
help from my hubby but the packing, etc. fell on us.  We did have help
after we got to our destination but just thinking about it now makes
me shutter.  In many ways our society does not care about our elderly
or people with mobility problems.  When you have family, you have
everything.

Patti

On Sat, Mar 31, 2012 at 8:41 PM,   wrote:
> i'm dumbstruck at the  question "why do I stay" coming from this group.
>
> I am paralyzed -- i would think folks here at least might understand what
> having a disability thrust on them late
> in life would mean.
>
> Or maybe i just didn't know that there were services that buy one's home,
> pack one up, and relocates them to more congenial
> and supportive communities.
>
> I never found such, but it could just be the limits of my imagination.
>
> Or maybe i'm the only person here without the money to just buy myself the
> solutions i need.
> I am obviously wrong on many counts.
>

Re: [TMIC] April Birthdays

[Pat Cooley]

HAPPY BIRTHDAY TO ALL THE APRIL BABIES.

PATTI IN WISCCONSIN

On Sat, Mar 31, 2012 at 10:55 PM, Barbara H.  wrote:
> Happy Birthday! May all your April showers bring May flowers!
>
> (Please send any additions or corrections to tmic-list@eskimo.com.)
>
> 04/03 Jeron Rampersad (rumc...@hotmail.com)
>
> 4/10 Marie Dipietro (deer...@aol.com)
>
> 4/18 Bernard Butcher (bernie.butc...@honeywell.com)
>
> 4/20 Dianna (carg...@cs.com)
>
> 04/20 Todd Tarno (toddtm2...@sbcglobal.net)
>
> 4/21 Robert Diehl (sawmil...@verizon.net)
>
> 4-25 Shelia (sc...@aol.com)
>
> 4-29 Dalton H. Garis (malugss...@gmail.com)
>

Re: [TMIC] Re: tmic-digest Digest V2012 #119

[Pat Cooley]

Akua I am so sorry to hear that you have no services in your community
to assist you.  I live in small town (population just 6,000).  We even
have a taxi service as there are so many senior citizens living here
you aren't able to drive.  I am not sure about other services as I am
not lucky to need them as I have family here.

I will pray that things change for you.

Patti in Wisconsin

On Thu, Mar 29, 2012 at 11:06 PM,   wrote:
>
>
> From: Dalton Garis 
> Subject: Re: [TMIC] No mail
> Date: March 29, 2012 12:28:39 AM EDT
> To: Janice Nichols , James Berg
> , transverse myelitis 
>
>
> Like, for instance,
>
> Where Akua lives?
>
> D.
>
>
>
> I'm S glad you're the one who said that
> Thanks for listening and remembering the many small town horror stories I've
> shared.
>
> There's no infrastructure here, there is no grocery delivery, there is no
> accommodation. My  city rep berated me for expecting the city to pick up
> recycling weekly for free. I was paying $25 a month for garbage pick up, in
> addition to paying  for other people's children to be educated through my
> ever increasing property taxes.
> When i was in the nursing home, my car, in my private driveway was spotted
> without license plates, which i had friends take off the car to save $, and
> ticketed.  It was visible because i only have a carport, not a garage. So
> for five years i've had to  pay for  car i can't drive. I must a maintain
> the sidewalk that i don't own, the grass that i cannot have a handicapped
> parking sign in front of, so i can get in and  out of my house on those far
> occasions when i pay $60 to go 1 mile to the doctors!!!
>
> This is a small town -- 10,842 people. This the HQ of an old Fortune 500
> company the median age is 37.5.
> I miss  bagels and lox, hammantaschen, sfogiatelle, falafels, real sushi,
> rugelach….
>
> YEs, everyone was friendly when i was able bodied, but there are incursions,
> and insults and indifference
> from all and sundry since i've been paralyzed.
>
> Win the lottery Dalton -buy a ticket, just one and think of me and when you
> win,  just one  of your 392 millions will enable me to walk again and be
> free.
>

Re: [TMIC] SPASMS

[Pat Cooley]

Janice the one problem I have with my feet is that once in a great
while I do get a spasm in the left foot where it hurts like a charlie
horse and the foot turns in.  It goes all the way up my lef to my
thigh.  I can turn it back, but it turns again all by itself.  I
usually do what you do with a charlie horse, I straighten it out real
hard.  It hurts like hell, but it then goes away.  Also I can't wear
sandals or sliip on shoes as I can't keep them on my feet

Patti

On Mon, Mar 5, 2012 at 7:25 PM, Janice Nichols  wrote:
> Hi Guys,
>
> Would like responses on a problem that only recently – after 5 years of TM
> -  has occurred.
> When put my shoes on, my right foot (heel) spasms and makes it harder to
> walk.    Have any of you had
> this problem? Really looking forward to summer to wear sandals – don’t
> think there will be a problem then.
> Is strange that after all these years that this problem would show up.
>
> Thanks,
> Janice

Re: [TMIC] TM Question

[Pat Cooley]

Carol I always say I have TM, and I usually say it is an auto-immune
disease even though my TM was said to be idopathic.

Patti

On Mon, Mar 5, 2012 at 11:39 AM, Carol E  wrote:
> I curious about the proper way to explain our affliction.
> Do we currently have TM or we had it when we first became ill?
> Is it like Polio?  It came, crippled and you no longer have Polio, but you
> do have the destruction that it left behind.
>
> Thanks for your help in explaining this to me.
>
>
> Carol
> Worrying does not empty
> tomorrow of its troubles;
> It empties today of its strengths.
>

Re: [TMIC] March birthdays

[Pat Cooley]

I ALSO WANT TO SAY "HAPPY BIRTHDAY" TO ALL THE MARCH BABIES.

PATTI

On Sat, Mar 3, 2012 at 5:34 AM, rn11...@yahoo.com  wrote:
> HAPPY BIRTHDAY TO ALL THOSE BORN IN MARCH!
>
>     CHERYL

Re: [TMIC] what do i do

[Pat Cooley]

Candy all you have to do is create a facebook page.  I couldn't do it
but my daughter sit it up for me.  Once you do that all you have to do
is find a facebook member request to be friended, that person can
accept you as a friend and then set you up with our several TM sites.
We have one just for us gals, then a general one for both men and
women.  It sure sounds like you have been through h - - l.  There are
plenty of us who can relate and give you plenty of advice.

Good luck

Patti in Wisconsin

On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes  wrote:
> i apologize again.  I know I responded previously (had some family
> issues)but not sure to whom or when.    I'll start over.   I was initially
> diagnosed with neurosarcoidosis (this was tentative), they tried to rule out
> MS (think they have), back to ground of TM.  However, TM should either turn
> into MS or NMO (Neuromyelitis Optika - which I do not have).  So I did more
> research and found a category of NMO Spectrum disorder.  This fits my
> illness so far.  Persons who remain in a TM status  but may continue to have
> relapses etc.  I continue to have "relapses".   Had one in October
> (Thoracic), increased my steriods back to 40 a day and changed me
> to CellCept.   I have now had new lesions this month (February) in my
> cervical spine (this is a new area).   Really having problems with walking
> and dragging both feet,  my gait if off, memory loss, tightness, light a
> vice around my torso, back pain, and awful pain at the base of my neck up to
> my ears. Cannot lay flat on my back of my head.  To painful
>
> I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone,
> Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and
> Lipitor.  Vicodin prn.
>
>  I plan to see my neurologist next week and will insist on plasma Pharisees.
>  Everything I have researched indicates this is the best choice at this
> point.  I had asked for this earlier (wished I had insisted).  This would
> allow my blood to be cleaned as best it could and then allow the cellcept to
> work on keeping the (This is what I call them) goblins from ganging up on my
> immune system.
>
> Steroids have destroyed my body.  I am now steroid dependent.  Docs are
> hoping to get me down to 10 to 15 a day.     Have just have cataract surgery
> on my eyes.  Had pelvic fractures, didn't know how I did it (one of the
> worst pains you can ever have).  Due to my first diagnosis (Spine tumor) had
> damage to my spine which has caused me to have loss of sensation from my
> waist down.  This is a really weird feeling.  Have to be extra careful since
> I do not know when I have cut myself, stepped on anything hot or cold, etc.
>
> Thanks for listening.   This week was crazy.   My mother in law passed away
> Monday (she was 91 had a great life),  became a grandmother for the first
> time (of course the MOST beautiful baby in the world - think all new
> granny's say that and then found out about my  new lesions).
>
> Can't wait until next week (tee hee)
>
> PS - I haven't learned how to go to anyone's blog, use twitter or facebook.
>  would like to learn since someone indicated you can reach out and touch
> more folks that way.
>
> Candy
>
> 
> From: Janice Nichols 
> To: Pat Cooley ; Cansadia Dykes
> 
> Cc: tmic-list@eskimo.com
> Sent: Sunday, February 5, 2012 11:05 AM
> Subject: Re: [TMIC] what do i do
>
> Candy,
>
> Patti in right.    Just tell your story, state any questions you may have
> (or concerns), and we will try to help you.    We have members that have
> been here from 1 year to 25 years.    Many tell of family support,
> if friend's support, location, vocation if not retired, how much help
> doctor's have been with medications, etc.      Most of us are on similar
> medications.        We call ourselves "TM'ers" for Transverse Myelitis.
> At this point, what problems did TM leave you with.    Most of us also have
> problems with our bladders and bowels.
>
> You can answer all of these or none of them.    It is up to you.      You
> will find that there really isn't much that hasn't been brought up and
> discussed, after all, we are all fighting the same battle.    We are
> very open with each other.
>
> My best to you,
> Janice, Missouri
>
>
> -Original Message- From: Pat Cooley
> Sent: Sunday, February 05, 2012 9:16 AM
> To: Cansadia Dykes
> Cc: tmic-list@eskimo.com
> Subject: Re: [TMIC] what do i do
>
> Candy welcome to our TM group.  I am sorry it had to be under these
> circumstances.  What we usually do is tell your story which we can all
> relate to.  Feel free to ask any questi

Re: [TMIC] ADVISORY: Sen. James to Kick Off Health Awareness Day

[Pat Cooley]

Way to go Kim.  Good luck & keep us informed.

Patti

On Tue, Feb 14, 2012 at 6:06 PM,  wrote:

> I successfully petitioned the state of Georgia for a Transverse Myelitis
> day and Senator James is going to the house floor Wednesday morning. I have
> been asked to speak to members of the state senate and excited to have this
> opportunity before me Wish me luck, will send pictures when we are done
>
>  K**im
>
> Press conference will start at 9:00 in front of the Capitol.
>
> Please be prepared to speak about Transverse Myelitis. You will be
> addressing legislators, constitituents, other health care provides, etc.
>
> We are then scheduled to have picture session with Governor Deal after the
> press conference.
>
> Next we will be recognize Transverse Myelitis in the Senate, and a forum
>
> You can bring a camera.
>
> We should be done about 2pm
>
>
>
>
> **
>
> * *
>
> * *
>
> *FOR IMMEDIATE RELEASE*
>
>
>
> *Contact:*
>
> Natalie Dale, Director
>
> Adam Sweat, Communications Specialist
>
> adam.sw...@senate.ga.gov
>
> 404.656.0028
>
> * *
>
> *Sen. James to Kick Off Health Awareness Day*
>
> * *
>
> *ATLANTA** (February 14, 2012)* - Sen. Donzella James (D-College Park)
> will host a press conference* TOMORROW*, February 15, to kick off Health
> Awareness Day at the State Capitol.  She will be joined by various interest
> groups including health care providers, concerned constituents, and
> Georgians who have been affected by chronic illnesses such as Transverse
> Myelitis.
>
>
>
>
>
> *WHO:*   Sen. Donzella James (D-College Park)
>
>
>
> *WHEN:* Wednesday, February 15, 2012 at 9:00 a.m.
>
>
>
> *WHERE:*  Georgia State Capitol
>
> Washington Street Steps
>
> 206 Washington St. SW
>
> Atlanta, GA   30334
>
>
>
> # # #
>
>
>
> *Sen. Donzella James represents the 35th Senate District which includes 
> portions
> of Douglas and Fulton counties.  She may be reached by phone at
> 404.463.1379 or by email at donzella.ja...@senate.ga.gov.*
>
>
>
<>

Re: [TMIC] what do i do

[Pat Cooley]

Candy welcome to our TM group.  I am sorry it had to be under these
circumstances.  What we usually do is tell your story which we can all
relate to.  Feel free to ask any questions that you may have and
someone will try to answer it.  Also, we also have several Facebook
sites you can join if you are interested; and are on FB.  If so,
befriend me and I will add.  The FB site is a busy one so you will be
able to reach more of us with your questions. If interested, you can
find me under Pat Cooley.

Patti in Wisconsin

On Sat, Feb 4, 2012 at 9:06 PM, Cansadia Dykes  wrote:
> hi,  I am new so not sure how to learn about others who may be having the
> same illness as me.
> thank you.
>
> Candy

Re: [TMIC] February Birthdays!

[Pat Cooley]

HAPPY BIRTHDAY TO ALL YOU FEBRUARY BIRTHDAY BABIES.  HAVE A GREAT DAY.

PATTI IN WISCONSIN

Re: [TMIC] Everything is relative

[Pat Cooley]

Regina, I feel he same way.  I have TM and I am able to walk with
cane/walker or electric scoooter when I know I will have to do a lot of
walking.  BUT, I feel that I am so very fortunate than so many of us
TMers,  I count my blessings every day.

Patti

On Thu, Jan 26, 2012 at 12:18 PM, Regina Rummel wrote:

>   Hi everybody,
>
> I visited a friend who had surgery Monday on her hammertoes and bunions
> (both feet).
>
> She told me that she has no patience to wait before she recovers, drives
> again, and gets to wear her designer shoes.  The waiting is driving her
> nuts, she said.
>
> In response, I said "Susan, just think that you'll soon have perfect
> walking feet and go on with your life as usual, while I'll never be well
> and back to normal".
>
> Back home in checking my email, I saw a teenager paralyzed in a hospital
> bed, sadly struck with TM as such a young age.  I said to myself, my lesion
> is low, I am so lucky.
>
> Everything is relative.
> R in Marin County
>
>
>

Re: [TMIC] Is it really so important to know?

[Pat Cooley]

Mary Ann - I am so glad you are aware of the TM camp program.  I can
see you have a beautiful and wonderful daughter.  You have so many
reasons to be proud of you and yourself.  You have brought up a well
adjusted girl.

Patti

On Wed, Jan 18, 2012 at 11:24 AM, Susan Kleinz  wrote:
> patti,
> mary ann,
>
> may i just say DITTO,
> exactly what is in my heart
>
> susan
> phx az
>
> On Jan 18, 2012, at 9:59 AM, Pat Cooley wrote:
>
>> Mary Ann my heart is breaking readdiing yoour daughter's couurageous
>> battle with TM.  I wish there was something I could do or say to make
>> it all better, especially since I have 2 granddaughters ages 9 & 13.
>> I don't know how I would handle iand t if they were affected with TM.
>> The thing I can do is put  you in touch with a TM wesite that may help
>> you and your daughter.  The TM website is www.myelitis.org has a lot
>> of information.  The website give information about  summer camp for
>> children with TM.  It is free all  you have to do it get to the camp
>> located in NC.  It is a week of fun and activities for kids, some in
>> wheelchairs and others in walkers, etc.  The families are included
>> also at no cost to you.  This year it is being held in August.  Their
>> website is www.thecenterforcourageouskids.org/camp.  If you cannot
>> located it, go the the www.myelitis.org websitie.  It will certainly
>> be good for your daughter to interact with all the kids and make
>> friendships that may last a lifetime.
>>
>> Patti in Wisconsin
>>
>> On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols 
>> wrote:
>>>
>>>
>>> You and your child absolutely break my heart.    At 60 years of age I
>>> have adjusted, mostly, to having TM.    I can not imagine my child of 7
>>> months contracting this disease.   Your obvious
>>> strength and love must be the most important thing you have given her.
>>>  Have you been able to have her contact, through websites,  other children
>>> that have TM?       Even as an adult it
>>> was very important to me to talk to other people with TM.    We feel so
>>> isolated with a disease this rare.    If she could email other kids to have
>>> communication with TM’ers,  it may help her.
>>>
>>> Your sentence about what TM did NOT take away from us really hit me hard.
>>>    What a wonderful outlook, and one many of us do not see.      Please stay
>>> in contact with us and let us know
>>> how your daughter is doing – you too.
>>>
>>> From: Mary Anne Egan
>>> Sent: Tuesday, January 17, 2012 1:22 PM
>>> To: Robert Pall
>>> Cc: subers...@msn.com ; tmic-list@eskimo.com
>>> Subject: Re: [TMIC] Is it really so important to know?
>>>
>>>
>>> I don't normally chime in...I am not an adult living with TM or the
>>> residual affects...I am the parent of a child who contracted TM at seven
>>> months...as such I too would love to know what caused it.  Mostly because if
>>> there is a genetic component or condition which attributed to this
>>> outcomeit would be in the hopes of preventing it from happening to any
>>> of  my other children or anyone's children for that matter (adults as well).
>>>  Ideally for me finding why this happened to her is a separate and less
>>> concerning pointI could easily say this is a case of bad luck...but then
>>> I would also have to say that bad luck is all around me...my father died
>>> three months before my daughter was paralyzed. my daughter proceeded to
>>> be in and out of the hospital choking and unable to breathe, not once but
>>> twice after onset...as a young child she could not tell us anything...we
>>> proceeded to go in and out all of the next couple of years with respirators
>>> and vents, etc...over the course of her life (now 9), she goes to a public
>>> school and has a "normal" lifeso for me it is ok...for her not so
>>> much...she is dynamic and determined but she is also sad and lonely...she
>>> does not have play dates, no one calls, she goes to parties as long as they
>>> are accessible (which is not always a consideration, understandably
>>> so)...she can not dress herself...she can ot get out of bed by herself...she
>>> can not dress the way she wants, she has a one to one aid, all day, no peer
>>> to peer privacy...she has to use a computer, go to the nurse to be cathed,
>>> can't really participate in gym or recess...she has to be pulled from class
>>> for PT and OT, she 

Fwd: [TMIC] Is it really so important to know?

[Pat Cooley]

Mary Ann my heart is breaking readdiing yoour daughter's couurageous
battle with TM.  I wish there was something I could do or say to make
it all better, especially since I have 2 granddaughters ages 9 & 13.
I don't know how I would handle iand t if they were affected with TM.
The thing I can do is put  you in touch with a TM wesite that may help
you and your daughter.  The TM website is www.myelitis.org has a lot
of information.  The website give information about  summer camp for
children with TM.  It is free all  you have to do it get to the camp
located in NC.  It is a week of fun and activities for kids, some in
wheelchairs and others in walkers, etc.  The families are included
also at no cost to you.  This year it is being held in August.  Their
website is www.thecenterforcourageouskids.org/camp.  If you cannot
located it, go the the www.myelitis.org websitie.  It will certainly
be good for your daughter to interact with all the kids and make
friendships that may last a lifetime.

Patti in Wisconsin

On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols  wrote:
>
> You and your child absolutely break my heart.    At 60 years of age I have 
> adjusted, mostly, to having TM.    I can not imagine my child of 7 months 
> contracting this disease.   Your obvious
> strength and love must be the most important thing you have given her.    
> Have you been able to have her contact, through websites,  other children 
> that have TM?   Even as an adult it
> was very important to me to talk to other people with TM.    We feel so 
> isolated with a disease this rare.    If she could email other kids to have 
> communication with TM’ers,  it may help her.
>
> Your sentence about what TM did NOT take away from us really hit me hard.    
> What a wonderful outlook, and one many of us do not see.  Please stay in 
> contact with us and let us know
> how your daughter is doing – you too.
>
> From: Mary Anne Egan
> Sent: Tuesday, January 17, 2012 1:22 PM
> To: Robert Pall
> Cc: subers...@msn.com ; tmic-list@eskimo.com
> Subject: Re: [TMIC] Is it really so important to know?
>
>
> I don't normally chime in...I am not an adult living with TM or the residual 
> affects...I am the parent of a child who contracted TM at seven months...as 
> such I too would love to know what caused it.  Mostly because if there is a 
> genetic component or condition which attributed to this outcomeit would 
> be in the hopes of preventing it from happening to any of  my other children 
> or anyone's children for that matter (adults as well).  Ideally for me 
> finding why this happened to her is a separate and less concerning pointI 
> could easily say this is a case of bad luck...but then I would also have to 
> say that bad luck is all around me...my father died three months before my 
> daughter was paralyzed. my daughter proceeded to be in and out of the 
> hospital choking and unable to breathe, not once but twice after onset...as a 
> young child she could not tell us anything...we proceeded to go in and out 
> all of the next couple of years with respirators and vents, etc...over the 
> course of her life (now 9), she goes to a public school and has a "normal" 
> lifeso for me it is ok...for her not so much...she is dynamic and 
> determined but she is also sad and lonely...she does not have play dates, no 
> one calls, she goes to parties as long as they are accessible (which is not 
> always a consideration, understandably so)...she can not dress herself...she 
> can ot get out of bed by herself...she can not dress the way she wants, she 
> has a one to one aid, all day, no peer to peer privacy...she has to use a 
> computer, go to the nurse to be cathed, can't really participate in gym or 
> recess...she has to be pulled from class for PT and OT, she always needs 
> modifications...she has the right to want to know why...but she never 
> asksyou know whybecause I tell her...you are one of the lucky ones.  
> There are people who have died from TM, people who cant talk, cant feed 
> themselves, cant breathe on their ownyes it easy for me to say but it is 
> true...she is one of the lucky ones and quite frankly so am I...in all that 
> TM brings it is essential to remember what it did not take away...finding out 
> why or how is not the information my child needs.  On her worst day she knows 
> it is still here with me and I am grateful.
>
>
>
> On Tue, Jan 17, 2012 at 2:05 PM, Robert Pall  wrote:
>>
>>     I understand the desire to know and understand what caused us to get 
>> TM. However the fact is that no matter how much research one does they will 
>> not find an answer because one does not exist at this time. I believe we 
>> were just unlucky and therefore I will not waste my time looking into the 
>> cause.but I will spend much time looking for the right medications that 
>> can relieve my suffering. Perhaps someday the medical community will provide 
>> us with the answeruntil then 

Re: [TMIC] TM and the brain

[pat cooley]

John no need to apologize.  Questioning is how we learn.

Patti

On Sat, Jan 14, 2012 at 9:18 PM, john snodgrass  wrote:

> I apologize for any inconvenience I have caused in the questioning of
> anything concerning TM and the brain.
>
> it really doesn't matter if I am right or wrong in these matters.
>
> it doesn't fix anything to be right and it doesn't break anything to be
> wrong.
>
> I would rather be wrong and quiet than right and argumentative.
>
> again,,,my apologies
>

Re: [TMIC] TM and ambient temperature

[pat cooley]

I don't seem to have any problem with heat but I seem to suffer more with
the cold weather and living in N.E. Wisconsin you can imagine how I hate
winter.  Fortunately, we have a wood burning stove in the living room and
we can crank it up

Patti - Wisconsin

On Fri, Jan 6, 2012 at 3:20 PM, Janice Nichols wrote:

>   Ryota,
> All I can say about temperatures is that I can not tolerate warm
> temperatures.My head starts sweating and I feel light headed.   I just
> get weak all over.Our heating bills are low in the winter
> because we keep the house so cool. Of course, our summer cooling bills
> are fairly high because we keep it pretty cool in the house.We live in
> Missouri in the US.  I guess we are all different.
> Janice
>
>
>  *From:* Ryota Nishino 
> *Sent:* Saturday, December 31, 2011 9:56 PM
> *To:* TM list 
> *Subject:* [TMIC] TM and ambient temperature
>
> Hello,
> Following our recent discussion, I think I could report one thing to you.
> I moved from New Zealand to Fiji in June 2011 as I got a new job here.
> Within three days of arrival in Fiji, the 'pins and needles' sensations
> across my belly disappeared and receded to mid thigh. I had had TM since
> Oct 2010. This may be the full extent of my recovery, though.
>
> Some people say TM can exacerbate under heat. But my GP back in New
> Zealand, who operates on an 'integrative medicine' paradigm, commented that
> if the ambient temperature is too low, the energy gets chewed up thinking
> about coping with the cold. Certainly his comment rings true to me. TM has
> accentuated my aversion to winter. I lived in Christchurch, NZ, shaking
> since September 2009. Cold and damp winter. Unlike North America, central
> heating is unheard of. The 'stiff upper lip' mentality is encouraged to
> endure the poor heating apparatus and appalling housing.
>
> Any thoughts on TM and ambient temperature?
>
> Ryota
>
>
>

Re: [TMIC] Extent of your TM? Pins and Needles

[pat cooley]

Carol it sounds like you are doing fairly well considering that you have
TM.  I do have braces that I must admit I haven't been faithfully wearing
them lately.  I was told they would help me with my balance, but they are a
pain to put on and take off.  But you have shamed me into wearing them agan
and see what happens.  The only meds I take are gabapentin.  I am taking
300 mg at night.  I used to take 600 mg at night, but it seems since taking
it I have put on 15 pounds which I don't want or need so I am weaning
myself off and then will stop completely.  I have been taking it for almost
a year and I have found that it does absolutely nothing for the
pins/kneedles or burning/freezing so why continue taking it.  Hopefully, I
will be able to loss the extra weight.  My feet bother me more in the
evening after dinner and I am just sitting reading the paper or watching
TV;.  Maybe that is because my mind is not busy and is all I think about.
Fortunately, I am able to fall asleep without too much trouble.  I do get
various pains in my feet that feel as though something is stabbing me, but
I know it is just my nerves talking to me.  I know that this is the way it
will be, but I wish and pray that no more children or young women get this
terrible terrible condition.  I can't imagine how these young women with
children are able to manage their lives.

Bless you too and keep thinking positive.

Patti in Wisconsin

On Fri, Jan 6, 2012 at 12:57 PM, pat cooley  wrote:

> Carol your story sounds just like mine.  I too now get around the house
> without cane/walker but I do use a cane when I gol out.  I am able to walk
> around most stores hangingj on to the cart but if I go to stores where I
> have to do a lot of walking I take my electric scooter and then I can power
> shop with the best of them.  I still have the pins & needles and the
> burning/freezing in my feet and up to my knees.  I know this is the way it
> will always be since it has been almost 4 yrs, but I see that I am not
> suffering as much as so many of us TMers.
>
> Patti in Wisconsin
>
> On Thu, Jan 5, 2012 at 5:27 PM, Carol E  wrote:
>
>>  Jim,
>> June 2005, I  went to bed with severe pins and needles feeling in my
>> right leg.  When I woke up, it was as limp as a noodle.  I was admitted
>> through the ER and received IV steroids, I think it was 9 hours.  During my
>> 5 week stay in the hospital, I received intensive PT.  About 3 weeks into
>> my physical therapy, I remember the therapist told me to try to wiggle my
>> toes.  I looked her like she was *seriously crazy*.  I triedand they
>> moved (very little, but they moved).  Brought both of us to tears.  Before
>> my discharge, I was walking small distances with a walker and I know use a
>> cane.  I continued with out patient physical therapy for about 2 months.
>> My power shopping days are over, LOL! but I can walk in, get what I need,
>> and leave.  On bad days, I don't even try it.   Both legs feel very heavy,
>> but my right leg is worse.  I too have pins and needles torture from my
>> toes up to my waist.
>>
>>
>> *Carol *
>>
>> --
>> Date: Tue, 3 Jan 2012 11:55:22 -1000
>> From: molokai...@gmail.com
>> To: tmic-list@eskimo.com
>> Subject: [TMIC] Extent of your TM? Pins and Needles
>>
>> From the discussion of Pins and Needles it seems that most of you are
>> able to get around and have some use of your legs.  I have pins and needles
>> from my feet to my belly and no use of my legs at all.  And they weigh a
>> ton.  Been like this since day  one.  Did any of you lose the use of your
>> legs and then get them back?  If so, how long did it take and how did you
>> do it?
>>
>> Jim
>>
>
>

Re: [TMIC] Extent of your TM? Pins and Needles

[pat cooley]

Carol your story sounds just like mine.  I too now get around the house
without cane/walker but I do use a cane when I gol out.  I am able to walk
around most stores hangingj on to the cart but if I go to stores where I
have to do a lot of walking I take my electric scooter and then I can power
shop with the best of them.  I still have the pins & needles and the
burning/freezing in my feet and up to my knees.  I know this is the way it
will always be since it has been almost 4 yrs, but I see that I am not
suffering as much as so many of us TMers.

Patti in Wisconsin

On Thu, Jan 5, 2012 at 5:27 PM, Carol E  wrote:

>  Jim,
> June 2005, I  went to bed with severe pins and needles feeling in my right
> leg.  When I woke up, it was as limp as a noodle.  I was admitted through
> the ER and received IV steroids, I think it was 9 hours.  During my 5 week
> stay in the hospital, I received intensive PT.  About 3 weeks into my
> physical therapy, I remember the therapist told me to try to wiggle my
> toes.  I looked her like she was *seriously crazy*.  I triedand they
> moved (very little, but they moved).  Brought both of us to tears.  Before
> my discharge, I was walking small distances with a walker and I know use a
> cane.  I continued with out patient physical therapy for about 2 months.
> My power shopping days are over, LOL! but I can walk in, get what I need,
> and leave.  On bad days, I don't even try it.   Both legs feel very heavy,
> but my right leg is worse.  I too have pins and needles torture from my
> toes up to my waist.
>
>
> *Carol *
>
> --
> Date: Tue, 3 Jan 2012 11:55:22 -1000
> From: molokai...@gmail.com
> To: tmic-list@eskimo.com
> Subject: [TMIC] Extent of your TM? Pins and Needles
>
> From the discussion of Pins and Needles it seems that most of you are able
> to get around and have some use of your legs.  I have pins and needles from
> my feet to my belly and no use of my legs at all.  And they weigh a ton.
> Been like this since day  one.  Did any of you lose the use of your legs
> and then get them back?  If so, how long did it take and how did you do it?
>
> Jim
>

Re: [TMIC] Power Balance Wristbands

[pat cooley]

Kevin thanks for checking into this.  I figured it was a scam.

Patti - Wisconsin

On Tue, Jan 3, 2012 at 9:07 AM, kevin weilacher  wrote:

> Scam
> http://gizmodo.com/5723577/powerbalance-admits-their-wristbands-are-a-scam
>
>   --
> *From:* I Whiddett 
> *To:* tmic-list@eskimo.com
> *Sent:* Tuesday, January 3, 2012 7:17 AM
> *Subject:* [TMIC] Power Balance Wristbands
>
> Hello Everyone - A Happy New Year to all.  Just saw ice dancing king,
> Christopher Dean,praising these wristbands.  I have no hopes of taking to
> the ice, although I did enjoy roller skating back in the day, but has
> anyone tried these bands for balance problems caused by TM damage?
> re the recent discussion on long pants under trousers, Marks and Spencers
> thermal long pants and camisoles are wonderful, only wish I had discovered
> them sooner.
> Iris UK
>
>
>
>

Re: [TMIC] New Year Prayer for all of us

[pat cooley]

Thanks Dalton.

On Mon, Jan 2, 2012 at 11:12 AM, john snodgrass  wrote:

> thanks Dalton
>
>   --
> *From:* Dalton Garis 
> *To:* TM list 
> *Sent:* Sunday, January 1, 2012 11:10 AM
> *Subject:* Re: [TMIC] New Year Prayer for all of us
>
> Fellow sufferers;
>
> I offer this prayer, called the *Remover of Difficulties* prayer, which I
> have recited for decades, sometimes 400-500 times/day in times of great
> pain or stress, for inner calm and the expectation of better things to come
> from sources and directions I did not imagine.
>
> *Is there any Remover of Difficulties save God?  *
> *Say: Praised be God.  He is God.*
> *All are His servants, and all abide by His bidding.*
>
> Love,
>
> Dalton
>
> *
> *
>
> From: pat cooley 
> Date: Sun, 1 Jan 2012 09:45:47 -0600
> To: 
> Cc: Gillian Clark , TM list <
> tmic-list@eskimo.com>
> Subject: Re: [TMIC] RE Pins and Needles
> Resent-From: 
> Resent-Date: Sun, 1 Jan 2012 07:49:01 -0800
>
> Patti I have found that the cold is much worse for me.  I have found that
> if I wear soft long underwear under my jeans it doesn't bother me and helps
> to keep me warmer.  I too always have the pins & needles plus the
> burning/freezing all the time, but it is so much worse in the evening..  I
> believe that I have learned to live with it since I am able to fall asleep
> and stay asleep all night except to go potty at least once maybe twice.  I
> have also been told by doctors that the pins & needles in the feet is
> called neuropathy, which is the same nerve pain that people with diabetes
> suffer from.  I have a good friend with diabetes and has suffered with it
> for years.
>
> Patti in Wisconsin
>
> On Sat, Dec 31, 2011 at 9:22 PM,  wrote:
>
> Gilly
> You are right to remide us about cothes, shoes and sock contributing to
> our TM pain.  I think I've posted for eight straight winters that wearing
> blue jeans in cold weather puts me right to bed due the the intense pain
> the cold material causes. New TMers beware! It isn't just the heat that
> causes additional painful sensations.  The cold weather causes its own set
> of problems.
>
> Patti - Michigan
>
>
> On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote:
>
>  John, the sad fact is that  nothing really takes it away, I have so far
> racked up a bit over 10 years of  it.
>
> I must say though that I do  believe it has decreased somewhat.  Either
> that or I'm just used to  it.
>
> I don't do meds as all they  did was make me completely spaced out or
> zombie like and the pain was still  there.  Strangely enough, just the
> everyday little old aspro or Panadol  help.  Maybe because they concentrate
> on any other unrelated pain that then  lessons the tm residuals.  I have no
> idea why, I just know that's what  happens for me.
>
> There are other external  causes.  The shoes you wear, your socks (always
> wear them inside out), the  clothes you wear, particularly the type of
> material.  I found that by  paying attention to these things, I can lesson
> (not by a whole lot) these  annoying freeze/burn feelings.
>
> Gilly
> - Original Message -
> *From: **john snodgrass*
> *To: **James Berg*; *pjv1...@chartermi.net*
> *Cc: **tmic*
> *Sent: *Saturday, December 31, 2011 7:47AM
> *Subject: *Re: [TMIC] RE Pins andNeedles
>
> wastalking with the neurologist yesterday about the buzzing,vibrating
> feelingthat sometimes go all the way into my chest but stays mainly in
> my legs andfeetwhen its not buzzing it is burning. he called it
> something but ifailed to write it down.
>
> Itried MJ but for me,,,it made it intensify!
>
> nothingi have taken to date has had any positive effect on that
> symptom.
>
> creams,muscle rubs,neuronton,baclofen,  Xanax ,valium,Lyrica
> alcohol,MJ.
>
>
> scratchthat off my to do list.
>
>
> ___
>
> *From: *James Berg
> *To: *pjv1...@chartermi.net
> *Cc: *tmic 
> *Sent: *Friday, December 30,2011 4:05 PM
> *Subject: *Re:[TMIC] RE Pins and Needles
>
> Gerry and Pati--you can control the cost by buying your meds a River
> Pharmacy--out of India--they are honest and the drug is quality
>
> Jim
>
>
> On Wed, Dec 28, 2011 at 6:01 PM, < *pjv1...@chartermi.net*> wrote:
> Gerry,
> Many of us faced the same  thing.  Movement and feeling also brought
> the feeling of pins and  needles.
>
> I've taken Lyrica for about  three years - it helps a lot.  I don't
> know about side effects except  the cost can empty your wallet.  I
> would have stuck with gabapentin,  but it was unpredictable.  Lyrica
> starts working witin 15  minutes.  Gabapenten took an hour or two to
> work.
>
> The best pan reliever is  laughter and the posts I read tonight
> relieved my pain for a while.
>
> The antidepressant,  Cymbalta, might help with the pins and needles.
> Of course, it's  another drug with a lot of side effects.
>
> Pati -  Michigan
>
>
>
>
>
>
>
>
>

Re: [TMIC] January Birthdays

[pat cooley]

HAPPY BIRTHDAY ALL OF THE JANUARY BABIES.  I HOPE YOU ALL KEEP WARM.

PATTI IN WISCONSIN

On Sat, Dec 31, 2011 at 11:50 PM, Barbara H.  wrote:

> Happy Birthday to the New Year's kids from January!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 1/8 Nancy Williams   (willj...@aol.com)
>
> 1-8 Sandi (sam...@fidmail.com)
>
> 1-17 Ginna Hamilton (ginnahamil...@yahoo.com)
>
> 1/20 Kay Cole (k...@cole.gen.nz)
>
> 1-21 Blaine Frye (xring...@mwt.net)
>
> 1/21 Carol Easterday snow121...@hotmail.com
>
> 1/23 Grace (grace...@gmail.com)
>
> 1-27 Pat S. (w2sm...@aol.com)
>
> 1-28 Holly (r...@aol.com)
>
> 1-28 Sally (thenavigato...@aol.com)
>
>

Re: [TMIC] RE Pins and Needles

[pat cooley]

Patti I have found that the cold is much worse for me.  I have found that
if I wear soft long underwear under my jeans it doesn't bother me and helps
to keep me warmer.  I too always have the pins & needles plus the
burning/freezing all the time, but it is so much worse in the evening..  I
believe that I have learned to live with it since I am able to fall asleep
and stay asleep all night except to go potty at least once maybe twice.  I
have also been told by doctors that the pins & needles in the feet is
called neuropathy, which is the same nerve pain that people with diabetes
suffer from.  I have a good friend with diabetes and has suffered with it
for years.

Patti in Wisconsin

On Sat, Dec 31, 2011 at 9:22 PM,  wrote:

> Gilly
> You are right to remide us about cothes, shoes and sock contributing to
> our TM pain.  I think I've posted for eight straight winters that wearing
> blue jeans in cold weather puts me right to bed due the the intense pain
> the cold material causes. New TMers beware! It isn't just the heat that
> causes additional painful sensations.  The cold weather causes its own set
> of problems.
>
> Patti - Michigan
>
>
> On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote:
>
>  John, the sad fact is that  nothing really takes it away, I have so far
> racked up a bit over 10 years of  it.
>
> I must say though that I do  believe it has decreased somewhat.  Either
> that or I'm just used to  it.
>
> I don't do meds as all they  did was make me completely spaced out or
> zombie like and the pain was still  there.  Strangely enough, just the
> everyday little old aspro or Panadol  help.  Maybe because they concentrate
> on any other unrelated pain that then  lessons the tm residuals.  I have no
> idea why, I just know that's what  happens for me.
>
> There are other external  causes.  The shoes you wear, your socks (always
> wear them inside out), the  clothes you wear, particularly the type of
> material.  I found that by  paying attention to these things, I can lesson
> (not by a whole lot) these  annoying freeze/burn feelings.
>
> Gilly
> - Original Message -
> *From: **john snodgrass*
> *To: **James Berg*; *pjv1...@chartermi.net*
> *Cc: **tmic*
> *Sent: *Saturday, December 31, 2011 7:47AM
> *Subject: *Re: [TMIC] RE Pins andNeedles
>
> wastalking with the neurologist yesterday about the buzzing,vibrating
> feelingthat sometimes go all the way into my chest but stays mainly in
> my legs andfeetwhen its not buzzing it is burning. he called it
> something but ifailed to write it down.
>
> Itried MJ but for me,,,it made it intensify!
>
> nothingi have taken to date has had any positive effect on that
> symptom.
>
> creams,muscle rubs,neuronton,baclofen,  Xanax ,valium,Lyrica
> alcohol,MJ.
>
>
> scratchthat off my to do list.
>
>
> ___
>
> *From: *James Berg
> *To: *pjv1...@chartermi.net
> *Cc: *tmic 
> *Sent: *Friday, December 30,2011 4:05 PM
> *Subject: *Re:[TMIC] RE Pins and Needles
>
> Gerry and Pati--you can control the cost by buying your meds a River
> Pharmacy--out of India--they are honest and the drug is quality
>
> Jim
>
>
> On Wed, Dec 28, 2011 at 6:01 PM, < *pjv1...@chartermi.net*> wrote:
> Gerry,
> Many of us faced the same  thing.  Movement and feeling also brought
> the feeling of pins and  needles.
>
> I've taken Lyrica for about  three years - it helps a lot.  I don't
> know about side effects except  the cost can empty your wallet.  I
> would have stuck with gabapentin,  but it was unpredictable.  Lyrica
> starts working witin 15  minutes.  Gabapenten took an hour or two to
> work.
>
> The best pan reliever is  laughter and the posts I read tonight
> relieved my pain for a while.
>
> The antidepressant,  Cymbalta, might help with the pins and needles.
> Of course, it's  another drug with a lot of side effects.
>
> Pati -  Michigan
>
>
>
>
>
>

Re: [TMIC] RE Pins and Needles

[pat cooley]

James when I first got TM I ordered vitamin supplements for TM that came
from India.  After taking them for a few months, my doctor found that it
was affecting my liver.  They were concerned and were going to do a liver
biopsy .  I stopped taking the vitamins and when they did a secon dblood
test they found my liver was back to normal and I didn't need the
biopsynormal so I will never take things that are made in foreign countries.

Patti - Wisconsin

On Fri, Dec 30, 2011 at 3:05 PM, James Berg  wrote:

> Gerry and Pati--you can control the cost by buying your meds a River
> Pharmacy--out of India--they are honest and the drug is quality
>
> Jim
>
> On Wed, Dec 28, 2011 at 6:01 PM,  wrote:
>
>> Gerry,
>> Many of us faced the same thing.  Movement and feeling also brought the
>> feeling of pins and needles.
>>
>> I've taken Lyrica for about three years - it helps a lot.  I don't know
>> about side effects except the cost can empty your wallet.  I would have
>> stuck with gabapentin, but it was unpredictable.  Lyrica starts working
>> witin 15 minutes.  Gabapenten took an hour or two to work.
>>
>> The best pan reliever is laughter and the posts I read tonight relieved
>> my pain for a while.
>>
>> The antidepressant, Cymbalta, might help with the pins and needles.  Of
>> course, it's another drug with a lot of side effects.
>>
>>  Pati - Michigan
>>
>>
>>
>

Re: [TMIC] OT: MERRY CHRISTMAS AND HAPPY HOLIDAYS!

[pat cooley]

Thank you Kevin.  I too hope for the same for us all.

Patti - Wisconsin

On Sat, Dec 24, 2011 at 3:18 PM, Kevin Wolfthal wrote:

>
> Dear old Building and Loan, I mean TMIC friends! (It's a Wonderful Life
> reference ;)
>
> I wish you all a very Merry Christmas and Happy New Year!
>
> With Love,
> Kevin Wolfthal
>
>

Re: [TMIC] ? time for scooter

[pat cooley]

You are right Priscilla.  Mine is a small one that can be taken apart in 5
pieces so we don't need a ramp for our mini van.  The heaviest piece is the
battery which weighs onoly 28 pounds.  My daughter can take it apart or put
it together in less than 2 minutes.

I couldn't live with it.

Patti - Wisconsin

On Fri, Dec 16, 2011 at 12:16 PM, Priscilla Keene wrote:

>
>  yep, it's time!  I've had 2; get a small one that comes apart and you
> can put into the trunk of your car. You will really enjoy it.
> *Have a wonderful day!*
> *Priscilla*
>
>  *From:* L T CHERPESKI 
> *To:* john snodgrass ; rn11...@yahoo.com; tmic <
> tmic-list@eskimo.com>
> *Sent:* Thursday, December 15, 2011 8:37 PM
>
> *Subject:* Re: [TMIC] ? time for scooter
>
>   So true John.  Cheryl ~ time for you to take a deep breath and relax.
> Your job now is to enjoy the holidays and let everybody else do all the
> work. You've more than earned it!!
>   Hugs,
>  Linda (Eagle, ID)
>
> - Original Message -
> *From:* john snodgrass 
> *To:* rn11...@yahoo.com ; tmic 
> *Sent:* Thursday, December 15, 2011 6:16 PM
> *Subject:* Re: [TMIC] ? time for scooter
>
>  if ya gotta get a scooter ya gotta get a scooter.
>
> Just like everything else with this stuff,,ya do when ya can and when ya
> cant ya dont.
>
>  *From:* "rn11...@yahoo.com" 
> *To:* tmic 
> *Sent:* Thursday, December 15, 2011 8:13 PM
> *Subject:* [TMIC] ? time for scooter
>
>   Hi,
>   Today I went to my granddaughters' school for a Christmas lunch,then to
> my oncologist for bone strengthening infusion. I'm wiped out and my back is
> going crazy with spasms.
>   I've decided to try and get a scooter;I just can't walk very much now.
> The walker just isn't enough now. It's been over 16 yrs with tm,and now I'm
> fighting the cancer too,and I'm just exhausted. I'll contact my pcp after
> the holidays,and see if I can get one.
>   Cheryl
>
>
>
>
>

Re: [TMIC] ? time for scooter

[pat cooley]

John I don't  have the pain, etc that you have been experiencing.  I do get
tried very easy which is one of my biggest complaints.  I did get an
electric scooter almost 2 years ago.  I don't regret it for one minute.  I
tried to go through my insurance company but they turned me down 3 times as
I am able to get around the house and take care of all my personal needs.
So

I finally purchased it myself.  It is wonderful as I can now join my family
when we have an outing that requires a lot of walking like the zoo, fair,
etc.  It is imazing as to how many people I meet who are also using them.
I used to use the electric carts my supermarket has for people, but I don't
any more as I figure I can use the exercise, but I am pooped when I get
home.

Try going through your insurance company first, as your physical needs may
be different from mine.  But if you can afford it think about purchasing it
yourself.  I know you can even purchase used scooters which could have you
some money.  Mine cost $1,300.00 about 2 years ago.

Patti in Wisconsin

On Thu, Dec 15, 2011 at 7:13 PM, rn11...@yahoo.com wrote:

> Hi,
>   Today I went to my granddaughters' school for a Christmas lunch,then to
> my oncologist for bone strengthening infusion. I'm wiped out and my back is
> going crazy with spasms.
>   I've decided to try and get a scooter;I just can't walk very much now.
> The walker just isn't enough now. It's been over 16 yrs with tm,and now I'm
> fighting the cancer too,and I'm just exhausted. I'll contact my pcp after
> the holidays,and see if I can get one.
>   Cheryl
>

Re: [TMIC] Cody in icu

[pat cooley]

I AM PRAYING FOR HIS COMPLETE RECOVERY.  I KNOW THAT A SERIOUS UTI CAN BE
FATAL IN CERTAIN CIRCUMSTANCES.

PATTI

On Tue, Dec 6, 2011 at 9:52 PM,  wrote:

>   Please say prayers for Cody. He is ICU on a respirator. He has had MRI,
> Cat scan, blood test cultures and a spinal tap. They are trying to figure
> out why he is not breathing on his own and his co2 level was so high. He
> has a UTI, but haven’t found anything else. Lungs are okay and so is his
> heart. I’ll update when I know more Judy
>

Re: [TMIC] December Birthdays

[pat cooley]

HAPPY BIRTHDAY OF ALL MY FELLOW DECEMBER BIRTHDAY BABIES.  I HOPE YOU ALL
HAVE A GREAT DAY.

PATTI - WISCONSIN

On Thu, Dec 1, 2011 at 11:09 PM, Barbara H.  wrote:

> Happy Birthday to those born in December!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 12-2 Meghan (bluemeg...@hotmail.com)
>
> 12/2 Ashlee Black (tracey.bl...@hnoins.com)
>
> 12/3  Janice (jan...@centurytel.net)
>
> 12-3 Wim from Holland (wim_from_holl...@hotmail.com)
>
> 12-4 Jan Burgess (ja...@rogers.com)
>
> 12-7 Patti in Wisconsin (patticoo...@wi.rr.com)(wpcoo...@gmail.com)
>
> 12-8 Lori Malloy (jorlcummi...@earthlink.net)
>
> 12-15  Alton Ryder(a-ry...@comcast.net)
>
> 12-18 Rod Jenke (rktje...@chariot.com.au)
>
> 12/23 Roger Pratt (r.c.pr...@frontier.com)
>
> 12-25 Gilly (mingalett...@activ8.net.au)
>
> 12/31 Janet (j.d...@shaw.ca)
>
>

Re: [TMIC] quiet ot

[pat cooley]

You're right Jane.  It has been quiet.  I guess everyone was busy with the
Thanksgiving Holiday.  I am always here, at least for part of the day.

I hope everyone had a good holiday.

Patti in Wisconsin

On Mon, Nov 28, 2011 at 8:10 AM,  wrote:

> **
> I hope everyone is ok.  It has been very quiet on this site since before
> Thanksgiving  or maybe I am kicked off again.   Missing you.
>
> Jane/Splendora Tx
>
>

Re: [TMIC] OT: The Bed Story

[pat cooley]

IT IS TIMES LIKE THIS WHEN YOU REALIZE HOW HELPLESS YOU ARE WHEN THERE IT
NO ONE AROUND TO HELP. THANK GOD AKUA THAT YOU WERE STUBBORN AND DIDN'T
GIVE UP AND FOUND AN ANGEL TO HELP YOU.

PATTI

On Sun, Nov 20, 2011 at 12:56 PM, Elizabeth Clark wrote:

>  *Amen, Bernie!*
>
> ** **
>  --
>
> *From:* Bernie [mailto:bpe...@austin.rr.com]
> *Sent:* Sunday, November 20, 2011 9:40 AM
> *To:* Akua; TMIC
> *Subject:* Re: [TMIC] OT: The Bed Story
>
> ** **
>
> *Hey Akua,
>Glad to hear you finally got some assistance and was able to get your
> bed fixed.  I've been trying to get a hospital bed with a trapeze for
> transferring, as my shoulders that have been my legs for moving for the
> last 20 years are worn out.  It would be so much easier to grab the bar and
> swing into bed than to have to hooch and schooch my body until I get into
> position for the night.  But since I can use my ARMS, I do not qualify from
> what I've been told!  If I couldn't use my arms, why would I need a
> trapeze?  It just gets crazier and crazier to try and get anything
> medically necessary these days with politics and the economy as it is,
> (unless you have private insurance, not Medicare) they keep taking more and
> more money from the programs we need to live to pay for the "war in Iraq",
> the "war on drugs", war on this and that, and to make sure THE GOVERNMENT
> gets their yearly cost of living increases.  I get one each year, but they
> take it right back as my Medicare deductible goes up equal to or greater
> than the increase!  But I try to look on the good side that I even have a
> bed, a roof over my head, food in the cupboards, a loving family, and a few
> good friends
> Peace,
> Bernie*
>

Re: [TMIC] November Birthdays

[pat cooley]

HAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIES!!

PATTI IN WISCONSIN

On Mon, Oct 31, 2011 at 11:03 PM, Barbara H.  wrote:

> Happy Birthday to those celebrating in November!
>
> Please send any additions or corrections to tmic-list@eskimo.com.
>
> 11-01 Ella (elbanks...@aol.com)
>
> 11-2 Jeff (jeffsmokeea...@yahoo.com)
>
> 11-03 Gina (gina1103c...@aol.com)
>
> 11-6 Margaret Monson (mag...@telus.net)
>
> 11-8 Diane (mon...@sympatico.ca)
>
> 11-12 Marie (chestnutr...@gtcom.net)
>
> 11/13  Kevin (wolft...@optonline.net)
>
> 11-17 Becky opi...@bellsouth.net
>
> 11/18 Drema (dho.d...@comcast.net)
>
> 11/20 Cossy (cos...@yahoo.com)
>
> 11/22 Judy Hoops (heyjude48...@aol.com)
>
> 11-25 Gunny (bgunny7...@aol.com)
>
> 11-27 Jack McMillan at rebarj...@aol.com
>
> 11-30 Louise Flagg (fla...@webtv.net)
>
>
>

Re: [TMIC] OT

[pat cooley]

THANKS JANE.  HAPPY HALLOWEEN TO YOU!

On Mon, Oct 31, 2011 at 10:14 AM,  wrote:

> **
> HAPPY HALLOWEEN EVERYONE!!!
>
>
>
> JANE/SPLENDORA TX
>

Re: [TMIC] Neurology Now on TM

[pat cooley]

One thing I have discovered that with TM we all are so different as to how
TM affects us.  I could cross my legs but I would have to help them get
there with my hand.  However, it would not be comfortable to keep them that
way for more than a minute.  Rucker is lucky that he can do so with comfor.

Patti - Wisconsin

On Fri, Oct 21, 2011 at 7:36 PM, Akua  wrote:

> Neurology Now ( free sub) has an article on TM in its Oct/Nov 2011 issue
> focusing on Allen Rucker.
> Kevin Sorbo is on the cover.
>
> I was glad to see the coverage!
>
> I was surprised at the picture of Rucker. I've told my friends  who send me
> vids about a "tell" , that I use to assess whether the person is in the same
> state as I am: crossed legs. I can't move my legs, I am paralyzed, I tell
> them.  So when tehy asks why or whether I can do such and such I point out
> to them that  the guy  who just got out the car from his wheel chair crossed
> his legs at the ankle,  for example.
>
> My legs splay, flop  and gap and my feet don't always stay on the foot
> rests.  Which makes for danger if i don't notice, as more than once, I've
> rolled on with an ankle stuck in a doorway.
>
> So it was a bit disconcerting to see this guy with his legs crossed, thigh
> over thigh, like a walker, posed in his wheelchair. That's a thousand
> percent more motion and control than I have.
>
> --
>
>

Re: [TMIC] Does anyone know?

[pat cooley]

Dalton it is a difficult decision to make forl all of us.  It is something
we all have to decide for themselves.  I for one will not get it.  I did
have a terrible case of shingles all most 20 years ago and hopefully once is
enough for me but still won't get the shot.

Patti - Wisconsin

On Wed, Oct 19, 2011 at 3:04 PM, Dalton Garis  wrote:

> But;
>
> What if we get the flu?  What then?  Maybe, it is as bad as the inoculation
> in terms of the potential harm?
>
> Everything is a benefit-cost situation.  I fear getting sick because of
> underlying conditions that might become so much worse that the risk
> associated with the flu shot seems worth taking.
>
> Dalton
>
> From: Linda Egli 
> Reply-To: Linda Egli 
> Date: Wed, 19 Oct 2011 09:10:47 -0700 (PDT)
> To: "kimharrison...@comcast.net" 
> Cc: "tmic-list@eskimo.com" 
> Subject: Re: [TMIC] Does anyone know?
> Resent-From: 
> Resent-Date: Wed, 19 Oct 2011 09:13:07 -0700
>
> I was dx'ed with TM 7 1/2 years ago.  My neurologist said it was most
> likely from the flu shot I had received 4 months earlier. I had taken a flu
> shot regularly every year for 20+ years without problems.  Per my
> neurologist - no immunizations of any kind (not even a tetanus shot from
> then on).  My PCP really does not agree but gives me a Rx for Tamiflu in
> case I am exposed to the flu. So far no problems, but I am very careful
> during flu season & stay away from crowds   Friends & family know stay
> away if they have any kind of cold or respiratoy infection.
>
> Linda E.
> East Texas
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> *From:* "kimharrison...@comcast.net" 
> *To:* James Berg 
> *Cc:* tmic-list@eskimo.com
> *Sent:* Tuesday, October 18, 2011 6:37 PM
> *Subject:* Re: [TMIC] Does anyone know?
>
> when I got TM 7 years ago it was in Oct and I had atleast 6 dr.s ask over
> and over if I had gotten a flu shot (i did NOT).. so that would tell me they
> suspect a flu shot can cause TM without comming right out and saying so...
> in the 7 years I have had TM, i have gotten the "flu" only once, kicked my
> butt for 3 days but less price to pay them something else worse happening..
> my two cents don't do it
>
> *From: *"James Berg" 
> *To: *tmic-list@eskimo.com
> *Sent: *Tuesday, October 18, 2011 6:09:34 PM
> *Subject: *[TMIC] Does anyone know?
>
> the neuro's who diagnosed my TM thought it may have been caused by a bout
> of Shingles I had.  Two years have passed and my wife is worrying I might
> get another bout of shingles that would result in more TM damage.  Should I
> get a Shingles vaccine shot or is that risking another attack of TM?  The
> shot is $235.00 and we have been saing for it but now I am wondering what
> the risk is.  Please contribute your knowledge.
>
> Jim
>
>
>

Re: [TMIC] is it too early? (off topic)

[pat cooley]

Jeron I am so glad you has such a good time.  It sure pays to take a chance
on life when you have an opporunity.  I have been thinking about you and
hoping all went well for you.

Keep us informed and good luck with this relation.

Patti - Wisconsin

On Wed, Oct 19, 2011 at 3:14 PM, Jeron Rampersad wrote:

>  Hey guys,
> Just to let you know, I had an amazing time. It was the most perfect
> weekend really. I can't remember ever being so relaxed. I did have a bit of
> a rough night on Sunday after I took her Scuba diving, but it was well worth
> it. The entire weekend was fun, we both had a really great time.
> I owe you guys a lot for your encouragement, I was really worried about
> nothing. I guess I thought I wasn't ready, but now I know I'm still
> attractive to the opposite sex and I can still put a smile on a woman's
> face.
> From the bottom of my heart guys, Thanks
> Always,
> Jeron
>
> --
> From: em...@telephonelady.com
> To: rumc...@hotmail.com
> Subject: RE: [TMIC] is it too early? (off topic)
> Date: Wed, 19 Oct 2011 11:22:19 -0400
>
>  Hi Jeron,
>
>
>
> Was just wondering how did you enjoy your weekend?  Did you both have a
> great time?
>
>
>
> Emily
>
>
>  --
>
> *From:* Emily [mailto:em...@telephonelady.com]
> *Sent:* Friday, October 14, 2011 2:21 PM
> *To:* 'Jeron Rampersad'
> *Subject:* RE: [TMIC] is it too early? (off topic)
>
>
>
> Well….the alternative would be to continue to hide the REAL you……then get
> further into the relationship….and then she finds out and wonders why you
> didn’t tell her about all of this sooner.  I say…get it out there…let her
> know the REAL you before both of you get so entangled that it becomes even
> more difficult to get it out in the open.  Why not give her a call right now
> and tell her of your concerns?  Tell her what you have is painful…..and it
> is a part of who you are.  Just a suggestion…..
>
>
>
>
>
>
>  --
>
> *From:* Jeron Rampersad [mailto:rumc...@hotmail.com]
> *Sent:* Friday, October 14, 2011 2:03 PM
> *To:* em...@telephonelady.com
> *Subject:* RE: [TMIC] is it too early? (off topic)
>
>
>
> Thanks Emily,
> We've "been" together already, but didn't spend a night together as yet.
> So, she gonna see me with all my pills and the routine I go through every
> night to fall asleep. I'm really afraid that I won't be able to hide my pain
> for the entire weekend. It might be too much to see so soon, do you know
> what I mean?
> Jeron
>  --
>
> From: em...@telephonelady.com
> To: rumc...@hotmail.com
> Subject: RE: [TMIC] is it too early? (off topic)
> Date: Fri, 14 Oct 2011 13:47:27 -0400
>
> Jeron,
>
>
>
> My suggestion is just go and enjoy yourself.  If “something” happens……so be
> it.  Life is too short.  Enjoy each day you have here on earth…..because as
> you already know life can change in a split second.
>
>
>
> Have you met with her already?  Does she know about your disability?  My
> husband has no feeling from the waist down so “nothing” is happening here
> but our relationship was so good and strong before this TM came into our
> life that we are able to sustain our love for each other without “something”
> happening in the bedroom.
>
>
>
> I hope all goes well with her…..have a good time….and come back on Monday
> and let us know how it went this weekend.  I wish you luck…..you deserve
> some happiness in your life.
>
>
>
> Regards,
>
> Emily
>
>
>
>
>
>
>  --
>
> *From:* Jeron Rampersad [mailto:rumc...@hotmail.com]
> *Sent:* Friday, October 14, 2011 12:42 PM
> *To:* tmic-list@eskimo.com
> *Subject:* [TMIC] is it too early? (off topic)
>
>
>
> Hey guys,
> I need some advice. Most of you would remember my wife leaving me in April
> of this year. Since then I've found acceptance of my lonliness and it really
> was not too bad.
> Anyway, some 2 months ago I met up an old friend from way back and well,
> let's just say sometimes life just has a way of hooking 2 people up. My
> problem is I'm going away with her this weekend to a resort on the island of
> Tobago for her birthday. I'm kind of wondering if I'm ready to spend a
> weekend with someone alone. Haven't thought about that since my
> separation/divorce. What if I start having real feelings for her? What if
> she wants more out of this "*relationship*" after this weekend, even
> though we spoke about it at lenght. I was really honest with her from the
> get go, suppose honesty becomes my downfall?
> Should I be scared guys? or should I just go and have funforget
> TM/fibromyalgia/vasculitis for a weekend and enjoy the company of a woman
> who I might like?
> Regards,
> Jeron
>

Re: [TMIC] shingles vaccine

[pat cooley]

Patti in Michigan - I agree with you.  My neuro (I am on my second because I
moved) and they both recommend that I NOT get any shots - even for singles.
I will take my changes.

Patti in Wisconsin

On Wed, Oct 19, 2011 at 9:35 AM,  wrote:

> Our local newspaper has a medical column in the Sunday edition by Dr.
> Anthony Komaroff.
> www.ask doctor k.com  Sunday had a column titled "shingles vaccine is a
> good idea for adults over 60".  A healthy 65 year old woman asked - what is
> shingles and should I get the shingles vaccine.  The doctor explained
> shingles and the vaccine.  Here is a portion of the article.
>
> "Getting the vaccine does not gurantee that you will noy get shingles.  But
> it does reduce your chances by 50 percent or more.  And it does an even
> better job of reducing your risk of postherpetic neuralgia.
>
> I've had patients worry that the vaccine itself could give them shingles.
> That's because the shingles vaccine is made with a weakened - not dead -
> form of the virus.  And a tiny percentage of people do get either a shingles
> or chicken pox - like rash within a month or so of getting the vaccine.
>
> You may wonder if the risks associated with the shingles vaccine, though
> minimal, outweigh its benefits.  And if we were only talking about shingles,
> you might be right.  It's not pleasant, but most people get through shingles
> just fine.
>
> Postherpetic neuralgia is another story.  It can last for months, even
> years, and be debilitating.  The shingles vaccine can cut the risk of that
> happening by two thirds.  And I'd say that tips the balance in favor getting
> the vaccine.  I've voted with my feet.  I got the vaccine, because I've seen
> too many of my patients suffer from postherpetic neuralgia.  Chronic pain
> can disrupt a person's life"
>
> (end of article)
>
> Jim,
> I think this is a question for a neurologist.  Unfortunately, I haven't
> seen mine in three years so I cannot ask for you.  I think it would be good
> of all our Tmers who are seeing a neuro to call and ask if the neuro votes
> yes or no for the vaccine and post the results for us.
>
> -
>
> Regarding the flu shot:
>
> I did not have a flu shot proir to my TM that was later lableled idiopathic
> - undetermined cause.  I was also asked dozens of times during my
> hospitalization and rehab if I had had the flu shot thus determining that
> all medical personal thought the shot causes TM.  Not so.  Medical personnel
> asked if we had had the flu shot because they know the flu shot can cause
> various reactions and it is one of the many questions they ask a patient.
> The neuro who diagnosed me with TM asked if I had the flu shot during his
> first observation of me.  I saw him for five years post TM and learned that
> he, his wife, and children received the flu shot annually.
> I asked my PCP in September why he didn't ask me if I wanted a flu shot.
> He said, "Do you?"  I questioned if he takes one and he said he did not
> because he is not prone to getting the flu and he will not push them on his
> patients.   That was the best answer I've received yet.  I am not getting
> the flu shot.
>
> ---
> Patti - Michigan
>

Re: [TMIC] Does anyone know?

[pat cooley]

Jim my doctors aren't positive but I had a very severe case of shingles in
the past before TM.  It was the worst experience that I have ever had.  The
pain for over a week was worse than when I had my children.
It took over 2 years before the sores and pain were completely gone, so I
too don't want to ever go through that again.  I am afraid to have the shot
thinking it might bring on another bout with TM.  It is a tough decision to
make.  You have to give it a lot of thought, but for me right now I will
pass on the shot.

Patti in Wisconsin

On Tue, Oct 18, 2011 at 5:09 PM, James Berg  wrote:

> the neuro's who diagnosed my TM thought it may have been caused by a bout
> of Shingles I had.  Two years have passed and my wife is worrying I might
> get another bout of shingles that would result in more TM damage.  Should I
> get a Shingles vaccine shot or is that risking another attack of TM?  The
> shot is $235.00 and we have been saing for it but now I am wondering what
> the risk is.  Please contribute your knowledge.
>
> Jim
>

Re: [TMIC] How can a spouse help?

[pat cooley]

Andrea I am so sorry for the pain and suffering your husband and you are
experiencing.  I say you because even though it is your husband with TM, I
know you suffer along with him.  I am also a victim of TM and have been
since 2008.  Each one of us has different difficulties and pain.  Some are
very severe and like me it is always there but I have become used to it. I
know so many people can't understand the pain as we may look very normal for
the most part.  Some are able to walk normally, and then some of us must use
canes/walkers/wheelchairs.

Is he under the care of a neurologist or pain specialist?  You may have to
try several to find one who is able to help him.  We welcome all caregivers
here as you need our support just as much as your hubby.  Please feel free
to ask all and any questions you may have.  There is nothing too embarassing
to ask as we have people here who can relate and may have advice for you.
We also have a private Facebook group with quite a few of people from  the
UK.  If you are interested, please let me know.

Patti in Wisconsin

.On Mon, Oct 10, 2011 at 8:38 AM, Andrea wrote:

>  Dear TM support group,
>
> ** **
>
> My husband became ill with TM in May 2011 and his symptoms have remained
> constant. He is in extreme pain from his chest down to his toes. The pain
> can be burning, tingling, icy, stabbing… He is now saying that he wants to
> end his life because he can no longer endure the suffering. He says that I
> am no help and do not understand what he is going through. This is correct.
> I do not understand. Because he looks normal, it is easy to forget that he
> is in constant pain.  This is why I went online to see if I can find a group
> that does understand and can possibly provide hope for him. I realise there
> is no guarantee that the symptoms will go away, but after reading your
> online stories, it looks like it can be possible.
>
> ** **
>
> Additionally, what can a spouse do to provide more support? He has had the
> symptoms for almost 6 months and every day plays like a broken record. I ask
> every day how he is and he unleashes a long list of painful symptoms.
> Besides taking his meds, is there any other therapy I can arrange for him
> that may provide relief? I feel useless. He is angry that I am not doing
> more, but I do not know what I can do besides taking care of the home and
> kids without burdening him with additional tasks.
>
> ** **
>
> Any advice would be greatly appreciated.
>
> Warm regards,
>
> Andrea
>
> ** **
>

Re: [TMIC] : Today is my 7 year anniversary

[pat cooley]

Janice I agree with you.  When I start feeling sorry for myself, I think
about all those who have it much worse and then I realize how lucky I am
that I can walk after a fashion and can get around.

Patti - Wisconsin

On Sat, Oct 8, 2011 at 10:19 AM, Janice Nichols wrote:

>   Kim, I agree we need to give constant thanks to our supporters.What
> would we do without them!This is my 4th year with TM and the adjustment
> has been
> hard, but I just read an article about a woman with ALS. I immediately
> was thankful I only had TM after reading the article, but after a while I go
> back to thinking
> what it was like before TM. I guess that is only human.
> Janice
>
>
>  *From:* kimharrison...@comcast.net
> *Sent:* Thursday, October 06, 2011 5:00 AM
> *To:* tmic-list@eskimo.com
> *Subject:* [TMIC] : Today is my 7 year anniversary
>
>
>   Today is my 7 year anniversary that TM, (transverse myelitis) came into
> my life.  I never would have imagined one morning I would wake up, my right
> foot be asleep and in less than 8 hours be paralyzed on the right side of my
> body from the waist down, changing my life forever. I have tried to welcome
> the challenges and have crossed many hurdles this spinal cord disease thrown
> at me. I would like to thank my family, friends and especially Brian for the
> love and support I have been given.  Sometimes I fail to say Thank You as
> often as I should to everyone who has supported me. I would not be where I
> am today without all of you. As I do not see a “cure” for this disease in my
> life time, the journey will continue and life as I know it will “roll on”
>
>
>
>
> http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6357597/k.3480/Living_Life_to_the_Fullest_with_TM.htm
>
>
>
>
>

Re: [TMIC] Good Morning All

[pat cooley]

Dalton I am so glad you are getting some relief from those horrible seizures
you experience.  I am sure our emotions play a big part in our physical
problems.  I sure hope it continues.  This time of the year is my favorite.
I live in middle Wisconsin in the country.  Our leaves are just so beautiful
and I just love the smell of the crushed leaves on the ground.  I just wish
this couldl go on longer.  It won't be long and our trees will be bare.
But, then we have spring to look forward to.  The hot weather doesn't bother
me, but I sure do hate the cold.

Patti - Wisconsin

On Sat, Oct 8, 2011 at 9:36 AM, Dalton Garis  wrote:

> I'm in;
>
> I have learned so much here.
>
> By the way, I went more than two weeks without a seizure attack, those fits
> that stiffened me up across the back so that I slid off the chair onto the
> floor like a pine board.  It has been since 9 January 2010 when I got the
> first one and I have been gurneyed many times with seizures since.  I got a
> bad one the other day, however, from the fantastic joy I felt being back in
> New England in the fall, with its pungent scents of wet leaves, and all the
> colors, and the sun beams playing in their midst.  The pure joy just
> exploded in my head and I seized up.
>
> But since leaving that furnace country the Gulf Middle East, the spells and
> fits have become fewer.  Only after a shower or heavy emotional or physical
> exertion do I have to worry about seizing up.
>
> Thanks, all,
>
> Dalton
>
> From: Patricia Cooley 
> Date: Sat, 8 Oct 2011 09:28:29 -0500
> To: Transverse Myelitis 
> Subject: [TMIC] Good Morning All
> Resent-From: 
> Resent-Date: Sat, 8 Oct 2011 07:30:39 -0700
>
> I have been on this site since the summer of 2008.  I am so glad to see
> more activity here.  I am on the TM facebook sites, but I miss so many of
> the people here who don't FB.  I hope we see a lot more postings from all of
> you.  At times all the posting on FB is just over whelming.
>
> Patti - Wisconsin
>
>